I wish I could say things were going better, but unfortunately they are not. When Maggie wasn't sleeping on me today, she was crying. This morning she was especially limp and listless, struggling to keep her head up. I don't know if this is due to the steroids or the meds we gave her to sleep last night. We ended up giving her Benedryl around 11:00 and then Ativan around 3:00. Maggie cried much of the night in between moments of sleep.
I just don't understand why steroids have to be so rough on her. I understand that they are difficult for all children, but I am sure that other kids are not constantly crying throughout the day in misery or pain. Maggie cried in pain much of the afternoon into the night last night, but I believe this pain was due to a bellyache in which was relieved before she went to sleep. Today much of her crying consists of discomfort or overall feeling of crumminess.
Maggie hasn't eaten hardly anything since yesterday for lunch. I managed to get her to eat some jello today and after coaxing her, she did drink some chocolate milk. Thankfully we are keeping her hydrated, but that's about it. She began keeping her mouth open this evening, which resulted in some drooling which makes us wonder if she has mouth sores, teething, or jaw pain from the Vincristine chemo she received on Monday. There should be no reason why she would have mouth sores as she hasn't received any chemo that would cause this and her counts are high enough to combat anything. Which makes us think it would be the latter.
Regardless, our inability to communicate with Maggie is very frustrating in that we are unable to help her. We can't quite remember the last time that Maggie responded this way to steroids, but we pray that it will subside as the effects wear off. I gave Maggie her last dose of steroids (for this month) tonight, so hopefully we'll begin to see signs of the "old" Maggie tomorrow night or Sunday.
Though we don't often see Maggie smile, I can't wait to see her smile, listen to her talk, and even tell us "no, no way, nope." Please pray for Maggie especially during this time.
Friday, September 18, 2009
Thursday, September 17, 2009
Inconsolable
I took Maggie to get her labs done today as she has been inconsolable all day. Since she has had diarrhea, we wondered if perhaps her potassium was really low. It ended up that though her potassium did drop from 3.8 on Monday to 3.1 today, it was not low enough to get an infusion or cause her constant crying. The disheartening thing was that we went in there with Maggie crying and we left with her still crying, not being told how to help her, other than an increase in her oral potassium (which will not help the pain that she is in).
Maggie has basically cried since noon today. The only time she doesn't cry is when she is in the stroller going for a walk. The walking seems to lull her to sleep. So, we have spent much of the day walking the neighborhood. It is so hard to watch her cry and not be able to do anything. This is no ordinary steroid whine, this is a full-fledged pained cry. Something is hurting her, but we don't know what due to her lack of communication. We wonder if she has stomach pain or if her teeth are hurting her. We have no idea other than the fact that she is refusing to eat, drink, or take her medicines, which normally she will gladly do.
Please pray for Maggie that whatever is causing the pain, it will go away immediately. If this continues, I am to call the doctor tomorrow. I just pray that it will pass quickly. We have 1 more day of steroids and then hopefully all will wear off and our baby will come back.
Maggie has basically cried since noon today. The only time she doesn't cry is when she is in the stroller going for a walk. The walking seems to lull her to sleep. So, we have spent much of the day walking the neighborhood. It is so hard to watch her cry and not be able to do anything. This is no ordinary steroid whine, this is a full-fledged pained cry. Something is hurting her, but we don't know what due to her lack of communication. We wonder if she has stomach pain or if her teeth are hurting her. We have no idea other than the fact that she is refusing to eat, drink, or take her medicines, which normally she will gladly do.
Please pray for Maggie that whatever is causing the pain, it will go away immediately. If this continues, I am to call the doctor tomorrow. I just pray that it will pass quickly. We have 1 more day of steroids and then hopefully all will wear off and our baby will come back.
Wednesday, September 16, 2009
Good and Bad
Good: Grandpa Bixler's piano recital was quite a good time. It was an afternoon of deep pride for grandpa and for Maggie. It was also a chance to thank a home community, church, and family. It was a great chance to meet two of our fellow leukemia families whom we've read about and followed online. The music was great, and we enjoyed every minute of it. Lastly, grandpa raised $5,000 dollars for children's leukemia research! Wow. We are humbled by his efforts and grateful for the support that the community demonstrated.
Bad: Maggie's diarrhea is very bad right now. When did we start with this? February. I wonder how much laundry detergent we've gone through since then? We continue to follow our almost-daily ritual of trying to decide if we need to take Maggie to the hospital to double-check that she is okay. Getting covered in liquid poo while in public barely makes us flinch anymore. The referral to Cincinnati Children's can't come quick enough. We are told that it could take a month or so to be seen.
Good: A very kind lady named Sue who often works the booth at the hospital lets us park for free. She has saved us a LOT of money over the past 14 months. The permanent pass that she gave us was taken away but she continues to let us through when she's on duty. She does it with a caring smile, too. Tonight Whitney said that it is gestures like this that makes her think that she can get through another day. Which speaks to how wonderful Sue is and also how worn down a mother of a child with leukemia (and nasty side effects) can get.
Bad: Whitney is 60% through her first steroid week without my being home during the day to help. Please say a prayer for Whitney and Maggie to get through the rest of the week. Maggie isn't falling asleep well (because of the steroid) and not staying asleep well (because of diarrhea attacks).
We should end with a positive I guess......Maggie is beautiful.
Bad: Maggie's diarrhea is very bad right now. When did we start with this? February. I wonder how much laundry detergent we've gone through since then? We continue to follow our almost-daily ritual of trying to decide if we need to take Maggie to the hospital to double-check that she is okay. Getting covered in liquid poo while in public barely makes us flinch anymore. The referral to Cincinnati Children's can't come quick enough. We are told that it could take a month or so to be seen.
Good: A very kind lady named Sue who often works the booth at the hospital lets us park for free. She has saved us a LOT of money over the past 14 months. The permanent pass that she gave us was taken away but she continues to let us through when she's on duty. She does it with a caring smile, too. Tonight Whitney said that it is gestures like this that makes her think that she can get through another day. Which speaks to how wonderful Sue is and also how worn down a mother of a child with leukemia (and nasty side effects) can get.
Bad: Whitney is 60% through her first steroid week without my being home during the day to help. Please say a prayer for Whitney and Maggie to get through the rest of the week. Maggie isn't falling asleep well (because of the steroid) and not staying asleep well (because of diarrhea attacks).
We should end with a positive I guess......Maggie is beautiful.
Tuesday, September 15, 2009
Steroid Week
We are on day 2 of 5 days of steroids for Maggie. Yesterday morning we went in for her monthly chemo infusion, anti-pneumonia infusion, IVIG (antibody infusion), and the start of steroids. Maggie's counts looked very good and Dr. French was happy to see her doing well, minus the diarrhea issue. He also commented on how different it was to see Maggie eating (she was munching away on butter with bits of potato and chocolate milk). We are always excited to see her eating as this once was not the case. And this is partly the reason why Maggie has been able to manage her diarrhea so well.
Her potassium was at 3.8 yesterday-- within the normal range even though she has been dealing with diarrhea for over a week. Maggie's managing it with her food and liquid intake, however, once we got home from the hospital, her diarrhea got out of control. It continued this evening as well, so she has had 3 very bad bouts of it. I just wonder how well her body will actually be able to manage given that she is losing so much liquid.
Dr. French also came in to talk to me yesterday about the possibility of being referred out to another GI specialist in another hospital. This diarrhea issue has been going on for so long and she has 10 more months of treatment, so it is likely that it will continue. I don't believe Dr. French is satisfied with the GI specialist at Dayton and what she decided. Basically, the book has been closed on Maggie's issues from their perspective, but it is hardly finished. After Andy and I discussed options, we have decided to look into a GI doctor at Cincinnati Children's to see if we can find anything else out.
I am to the point where I just assumed we would have to manage her diarrhea, but if there really was something else they could do, it would be very welcomed. To fight cancer is very stressful, but to add chronic diarrhea to the list adds to the stress. We continually wonder if she is hydrated, her potassium is within the correct limits, etc. Not to mention the amount of laundry and clean-up that we must do since diapers were not meant to handle diarrhea. Though I don't want to put Maggie through anymore invasive procedures, if they could find something, we would be so happy. And after talking with a nurse yesterday, what Maggie goes through daily dealing with diarrhea is probably more rough on her than a colonoscopy.
As we go through this rough week of steroids, please pray especially that Maggie's diarrhea will go away, that her body will maintain hydration and potassium, and that the effects of steroid will not be too great (fussiness, whining, sleep, etc.).
Thank you so much for your continued support. We appreciate all the comments and prayers.
Her potassium was at 3.8 yesterday-- within the normal range even though she has been dealing with diarrhea for over a week. Maggie's managing it with her food and liquid intake, however, once we got home from the hospital, her diarrhea got out of control. It continued this evening as well, so she has had 3 very bad bouts of it. I just wonder how well her body will actually be able to manage given that she is losing so much liquid.
Dr. French also came in to talk to me yesterday about the possibility of being referred out to another GI specialist in another hospital. This diarrhea issue has been going on for so long and she has 10 more months of treatment, so it is likely that it will continue. I don't believe Dr. French is satisfied with the GI specialist at Dayton and what she decided. Basically, the book has been closed on Maggie's issues from their perspective, but it is hardly finished. After Andy and I discussed options, we have decided to look into a GI doctor at Cincinnati Children's to see if we can find anything else out.
I am to the point where I just assumed we would have to manage her diarrhea, but if there really was something else they could do, it would be very welcomed. To fight cancer is very stressful, but to add chronic diarrhea to the list adds to the stress. We continually wonder if she is hydrated, her potassium is within the correct limits, etc. Not to mention the amount of laundry and clean-up that we must do since diapers were not meant to handle diarrhea. Though I don't want to put Maggie through anymore invasive procedures, if they could find something, we would be so happy. And after talking with a nurse yesterday, what Maggie goes through daily dealing with diarrhea is probably more rough on her than a colonoscopy.
As we go through this rough week of steroids, please pray especially that Maggie's diarrhea will go away, that her body will maintain hydration and potassium, and that the effects of steroid will not be too great (fussiness, whining, sleep, etc.).
Thank you so much for your continued support. We appreciate all the comments and prayers.
Saturday, September 12, 2009
Update and Big Weekend
Sorry for the tardy update. We've had a busy week and some computer difficulties as well. Maggie did go to the clinic and was given a good report. Her potassium was relatively low from her diarrhea, but it wasn't low enough to need to do anything different (no IV infusion). That was a relief for us as we know that sometimes she manages okay even with severe diarrhea for a few days.
More importantly, we got to see her blood counts for the first time in a long time, and they were in great shape. Her platelets have risen since the last time they were read and her white count and red count are fine as well. It was great to get the good report, and also nice to get the counts a week early so that we could relax until the next visit.
Maggie goes in for her next clinic visit for chemo on Monday and will start a week of steroids then as well. So, we begin our cycle of treatment, side effects, and slow recovery.
This weekend is exciting for us as Whitney is in her cousin's wedding today, and we have an exciting concert planned for tomorrow. Maggie will get to see both sides of her extended family this weekend.
My (Andy) dad is a pianist and provided the soundtrack for my childhood. I remember waking up on Saturdays to the sound of his practicing, he played in church quite often on Sundays, and in general, he filled our walls with beautiful music. He is very gifted. When Maggie became sick, he decided that he wanted to hold a benefit concert to support pediatric cancer research, and Sunday (tomorrow) is the day. He has spent many, many hours planning the concert, arranging some of the pieces, and getting them all ready to perform. A local family recently started "Lydia's Hope," a children's cancer foundation to support research...in honor of their daughter who lost her battle with AML leukemia earlier this year. The proceeds from the concert will support Lydia's Hope and will hopefully contribute to meaningful findings to better understand, treat, and defeat pediatric cancers.
It is going to be a wonderful event, although I don't know fully how it will feel until we get there. I know that it will be a very moving and uplifting time and I hope that Maggie feels well enough to be able to enjoy it. I know that I will be very proud of my dad, my daughter, and as always the families that have or will share our struggle.
We'll post an update and hopefully some pictures in the early part of the week. Also, we'll pass along info about Lydia's Hope and the projects it supports.
Thanks for your continued support and interest in Maggie.
More importantly, we got to see her blood counts for the first time in a long time, and they were in great shape. Her platelets have risen since the last time they were read and her white count and red count are fine as well. It was great to get the good report, and also nice to get the counts a week early so that we could relax until the next visit.
Maggie goes in for her next clinic visit for chemo on Monday and will start a week of steroids then as well. So, we begin our cycle of treatment, side effects, and slow recovery.
This weekend is exciting for us as Whitney is in her cousin's wedding today, and we have an exciting concert planned for tomorrow. Maggie will get to see both sides of her extended family this weekend.
My (Andy) dad is a pianist and provided the soundtrack for my childhood. I remember waking up on Saturdays to the sound of his practicing, he played in church quite often on Sundays, and in general, he filled our walls with beautiful music. He is very gifted. When Maggie became sick, he decided that he wanted to hold a benefit concert to support pediatric cancer research, and Sunday (tomorrow) is the day. He has spent many, many hours planning the concert, arranging some of the pieces, and getting them all ready to perform. A local family recently started "Lydia's Hope," a children's cancer foundation to support research...in honor of their daughter who lost her battle with AML leukemia earlier this year. The proceeds from the concert will support Lydia's Hope and will hopefully contribute to meaningful findings to better understand, treat, and defeat pediatric cancers.
It is going to be a wonderful event, although I don't know fully how it will feel until we get there. I know that it will be a very moving and uplifting time and I hope that Maggie feels well enough to be able to enjoy it. I know that I will be very proud of my dad, my daughter, and as always the families that have or will share our struggle.
We'll post an update and hopefully some pictures in the early part of the week. Also, we'll pass along info about Lydia's Hope and the projects it supports.
Thanks for your continued support and interest in Maggie.
Monday, September 7, 2009
Possible clinic visit
We have decided to call the clinic tomorrow and see if we should go in to get Maggie's counts checked. She has had diarrhea pretty much since Friday and so her potassium could be low. Maggie and I will be heading to Columbus on Wednesday for meetings for the duration of the week and then heading home for the weekend for my cousin's wedding and a benefit concert (more details about that later). Being that we will be gone for 5 days, we feel that it is probably best that we check her out so that we don't have to make a visit to another hospital later in the week.
With this visit will most likely come the most dreaded CBC (blood counts). We have talked before that when we haven't received counts in several weeks, our comfort level drops quite a bit. I worry a lot that the CBC will show "bad" numbers, but I think most families hold their breath even slightly when that time comes. Please pray that her counts will show that everything is on track and that they are perfect.
We are pretty sure now that the reason for Maggie's diarrhea is because of her chemo drug, Methotrexate, that she is taking on Wednesdays. About 2 days after taking the drug, she begins having diarrhea episodes, except normally they subside after about a day and half. This episode has lasted much longer and being that she will again receive Methotrexate on Wednesday, we want to make sure that she has some "room" to lose potassium.
Other than this bit of projected news, we had a pretty good weekend. Andy had his 30th birthday yesterday so we got out of the house and headed towards the Cincinnati area to a new outlet mall and Ikea. Today we spent the day with his family and my parents celebrating his birthday, along with his twin brother. Maggie had a chance to "play" with her cousin Ian and his cousin Eliza. Though she didn't readily play with them, there were moments where she came out of her shell and interacted with them. Those moments are really priceless for me as they don't often occur.
Please pray that Maggie's diarrhea will go away, that her counts will come back normal, and that she will never deal with cancer (or its side effects) again. Also, please say a prayer for a family that we have been following on caringbridge, as they lost their 1 1/2 year old baby girl, Alana, to cancer yesterday. This disease is cruel and unfair as little, innocent children are losing their lives. It also again reminds us of the reality of the disease and what it can do. All I can do is hold my little girl even more tight and pray that God will heal her.
With this visit will most likely come the most dreaded CBC (blood counts). We have talked before that when we haven't received counts in several weeks, our comfort level drops quite a bit. I worry a lot that the CBC will show "bad" numbers, but I think most families hold their breath even slightly when that time comes. Please pray that her counts will show that everything is on track and that they are perfect.
We are pretty sure now that the reason for Maggie's diarrhea is because of her chemo drug, Methotrexate, that she is taking on Wednesdays. About 2 days after taking the drug, she begins having diarrhea episodes, except normally they subside after about a day and half. This episode has lasted much longer and being that she will again receive Methotrexate on Wednesday, we want to make sure that she has some "room" to lose potassium.
Other than this bit of projected news, we had a pretty good weekend. Andy had his 30th birthday yesterday so we got out of the house and headed towards the Cincinnati area to a new outlet mall and Ikea. Today we spent the day with his family and my parents celebrating his birthday, along with his twin brother. Maggie had a chance to "play" with her cousin Ian and his cousin Eliza. Though she didn't readily play with them, there were moments where she came out of her shell and interacted with them. Those moments are really priceless for me as they don't often occur.
Please pray that Maggie's diarrhea will go away, that her counts will come back normal, and that she will never deal with cancer (or its side effects) again. Also, please say a prayer for a family that we have been following on caringbridge, as they lost their 1 1/2 year old baby girl, Alana, to cancer yesterday. This disease is cruel and unfair as little, innocent children are losing their lives. It also again reminds us of the reality of the disease and what it can do. All I can do is hold my little girl even more tight and pray that God will heal her.
Wednesday, September 2, 2009
Transitions
Today began a new day for all of us. Andy began his first day of a year-long internship in Cincinnati (the last requirement to receiving his doctorate degree). With this comes a lot of transitions for all of us.
Since Maggie was diagnosed, Andy took a year off from school and so there was always one of us with her. My job was very nice in that I could do a lot of work from home, so I was able to be home and at the hospital with Maggie also. So, in essence, Maggie has had both of us at home for the last year, and Andy and I have been there to support each other as well. This will no longer be the case.
Andy's commute to Cincinnati is about an 1:20 minutes and so he will be having long days. He actually got home tonight and was very tired (this is the first day in a long time that he has worked an 8 hour day). I will be taking on most of the care of Maggie, which in the past 5+ days, has been quite wearing as Maggie has been very needy and clingy. I have been "unemployed" this summer, though working part-time teaching at the college, but hopefully (for money's sake, not time's sake) my grant will be reinstated soon, so that will change as well. With that, I will try as hard as possible to be with Maggie during the day and then will work evenings and weekends. Regardless, things will be very tough for all of us and we will all be pulling long days.
Today was my first full day of taking care of Maggie and after having Andy around for a year, I took for granted the help and support that he provided. For example, my day began at 4:45 this morning when Maggie woke up to tell me that she needed "washed." Her diaper had once again betrayed us and she had wet through her clothes and onto the sheets. Rather than clean the sheets, I put a pad on top, changed her, all the while hoping she would go back to sleep. Not the case of course, and so for the next 40 minutes I walked Maggie around our house waiting for her to fall asleep.
At 7:45, Maggie again awoke to her bowels and her diaper again did not help us out and so the pad was dirty, as was Maggie. I changed her again, noticing that she was still tired (which I was happy about since I had not fallen back to sleep until after 6:00). So, I again walked her for 15 minutes and she went back to sleep.
Finally at 9:00, poor Maggie again awoke to her bowels and again, I took to cleaning her up. This however was not the end as not more than 15 minutes after that she went again, but this time it went all up her shirt and onto the rug. She and the rug ended up with a morning bath to finish things off.
Now, why am I sharing these poopy details? It's to tell you that our life is a 2-person job. It is rather difficult to handle poopy situations as the lone man (or woman). For this reason, I miss Andy already and know that this will be a long year. But, at the end of the year we will have two success stories-- a healed Maggie and a Dr. Andrew Bixler.
Turning tides a little bit-- Maggie again had her physical therapy this morning and things haven't changed much. She still cries continuously through the entire 30 minute session. I have skipped out on the last 2 sessions because it absolutely agonizes me to hear her crying like that and looking you in the eye like "rescue me." Her PT did say though that there are many kids who cry and actually refuse to do the work, but Maggie doesn't. She might cry, but she is still doing what is asked of her.
One little step in the right direction occurred today as Maggie stood on her own with no support for 30 seconds. She had done it for 5 seconds before, but this was a new record. I was so proud of my little girl as she stood there. She also used a walker and walked back and forth across the room. Our goal was to get her walking by her second birthday, but it doesn't look like we will. Our major issues are motivation or interest and confidence. The motivation is the key as she is content to sit and watch tv or be carried all day. She will talk about other children running or walking (her favorite right now and has been for over 2 weeks is "Ian walk."), but for some reason she doesn't care to do so.
It was good to see her progress though today as we feel in the last 2 weeks she has regressed. I think I just need to become a little more stern and have PT sessions in our house everyday. That will be rough for the both of us.
One more thing that Maggie is doing very well at is EATING. It is so weird to see her want to eat, but so wonderful as well. She has been a big fan of soup, so during her nap (all of 30 minutes) today, I made her a batch of potato cheese soup. She has been eating it constantly ever since. Hopefully this (and other items) will pack on the pounds, but more importantly, that her body will be able to absorb the nutrients and not lose it all in her stool.
Please continue to pray for Maggie as she fights this horrible disease and its side effects. And also pray for us all as we go through many new changes and transitions this upcoming year.
Since Maggie was diagnosed, Andy took a year off from school and so there was always one of us with her. My job was very nice in that I could do a lot of work from home, so I was able to be home and at the hospital with Maggie also. So, in essence, Maggie has had both of us at home for the last year, and Andy and I have been there to support each other as well. This will no longer be the case.
Andy's commute to Cincinnati is about an 1:20 minutes and so he will be having long days. He actually got home tonight and was very tired (this is the first day in a long time that he has worked an 8 hour day). I will be taking on most of the care of Maggie, which in the past 5+ days, has been quite wearing as Maggie has been very needy and clingy. I have been "unemployed" this summer, though working part-time teaching at the college, but hopefully (for money's sake, not time's sake) my grant will be reinstated soon, so that will change as well. With that, I will try as hard as possible to be with Maggie during the day and then will work evenings and weekends. Regardless, things will be very tough for all of us and we will all be pulling long days.
Today was my first full day of taking care of Maggie and after having Andy around for a year, I took for granted the help and support that he provided. For example, my day began at 4:45 this morning when Maggie woke up to tell me that she needed "washed." Her diaper had once again betrayed us and she had wet through her clothes and onto the sheets. Rather than clean the sheets, I put a pad on top, changed her, all the while hoping she would go back to sleep. Not the case of course, and so for the next 40 minutes I walked Maggie around our house waiting for her to fall asleep.
At 7:45, Maggie again awoke to her bowels and her diaper again did not help us out and so the pad was dirty, as was Maggie. I changed her again, noticing that she was still tired (which I was happy about since I had not fallen back to sleep until after 6:00). So, I again walked her for 15 minutes and she went back to sleep.
Finally at 9:00, poor Maggie again awoke to her bowels and again, I took to cleaning her up. This however was not the end as not more than 15 minutes after that she went again, but this time it went all up her shirt and onto the rug. She and the rug ended up with a morning bath to finish things off.
Now, why am I sharing these poopy details? It's to tell you that our life is a 2-person job. It is rather difficult to handle poopy situations as the lone man (or woman). For this reason, I miss Andy already and know that this will be a long year. But, at the end of the year we will have two success stories-- a healed Maggie and a Dr. Andrew Bixler.
Turning tides a little bit-- Maggie again had her physical therapy this morning and things haven't changed much. She still cries continuously through the entire 30 minute session. I have skipped out on the last 2 sessions because it absolutely agonizes me to hear her crying like that and looking you in the eye like "rescue me." Her PT did say though that there are many kids who cry and actually refuse to do the work, but Maggie doesn't. She might cry, but she is still doing what is asked of her.
One little step in the right direction occurred today as Maggie stood on her own with no support for 30 seconds. She had done it for 5 seconds before, but this was a new record. I was so proud of my little girl as she stood there. She also used a walker and walked back and forth across the room. Our goal was to get her walking by her second birthday, but it doesn't look like we will. Our major issues are motivation or interest and confidence. The motivation is the key as she is content to sit and watch tv or be carried all day. She will talk about other children running or walking (her favorite right now and has been for over 2 weeks is "Ian walk."), but for some reason she doesn't care to do so.
It was good to see her progress though today as we feel in the last 2 weeks she has regressed. I think I just need to become a little more stern and have PT sessions in our house everyday. That will be rough for the both of us.
One more thing that Maggie is doing very well at is EATING. It is so weird to see her want to eat, but so wonderful as well. She has been a big fan of soup, so during her nap (all of 30 minutes) today, I made her a batch of potato cheese soup. She has been eating it constantly ever since. Hopefully this (and other items) will pack on the pounds, but more importantly, that her body will be able to absorb the nutrients and not lose it all in her stool.
Please continue to pray for Maggie as she fights this horrible disease and its side effects. And also pray for us all as we go through many new changes and transitions this upcoming year.
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