We saw a moment of our old Maggie today when she asked for cake and said "Dada." We thought maybe she was coming out of her steroid trance, but that was only a moment of our old Maggie. Maggie has been dealing with nausea and vomiting today. She has vomited on 3 separate occasions, each time completely losing the little food that was in her belly (and medicine as well).
These steroids are just HORRIBLE on Maggie. They transform her and make her miserable. We have noticed that her eye-hand coordination has been affected as she put her hand in my milk today and when trying to grab a fry, grabbed my hand instead. I have never seen it this bad before, let alone this type of effect. I hope it is only temporary and this will resolve itself soon.
Please continue to pray for Maggie that the effects of the steroids will go away quickly. She is continuing to moan much of the day and is just as I said earlier, miserable. It aches us to see her feeling and acting this way.
Saturday, September 19, 2009
Friday, September 18, 2009
Steroid-Hell
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.
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.
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.
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