Songs of Love, a non-profit organization, made a personalized song for Anya and sent us a copy on a CD. I wish that you all could have been there that first time when we heard the song...Anya was all smiles and Israel and I were in tears, grateful that we still have our little Anya with us today. And of course, Anya has listened to it multiple times since that first time! :)
If you would like to request a "Song of Love" for a child or teen you know facing medical challenges, visit http://www.songsoflove.org/. You can also visit the website to listen to Anya's song for a donation. You have to know that her name is "Steinmetz" and the Record Number is "15121".
Monday, May 19, 2008
Thursday, May 8, 2008
Anya's Note
Anya wanted to write a note to "all of the people". She writes, "i love you".
And Esther is in bed.
And Esther is in bed.
Feeling Better
Anya woke up yesterday morning feeling pretty well so I prepared some breakfast for her. After just a few bites, she threw up what she had eaten so we called the nurse again. The nurse said again that we could bring her in or keep her home: we decided to keep her home. The nurse also suggested a bread and water diet - which Anya was not thrilled about! :)
But shortly after she lost her breakfast, Anya was up playing and didn't have any more complaints all day. So we're guessing that either she had a little virus or that the steroids caused problems with the acidity in her stomach as they have in the past. We'll have to see if the doctors want her to go back on the stomach medicine during her next round of steroids.
But we're thankful Anya is up and playing with no more diet restrictions!
But shortly after she lost her breakfast, Anya was up playing and didn't have any more complaints all day. So we're guessing that either she had a little virus or that the steroids caused problems with the acidity in her stomach as they have in the past. We'll have to see if the doctors want her to go back on the stomach medicine during her next round of steroids.
But we're thankful Anya is up and playing with no more diet restrictions!
Tuesday, May 6, 2008
"Hair" Prayers
In case you didn't get to read the last comment from a friend with two preschool age girls:
"Israel and Anna, Thank you for being vulnerable enough to share the rough times. It really touched my heart to hear Anya's sadness at not being able to have a ponytail - when I we pray at night for her - Katie & Maggie always ask for her to get her hair back."
Sometimes it seems so trivial to me to worry about such things when we have been blessed to still have Anya here. But it has really been emotionally challenging for her not to have hair, especially with the girly girl that she is. On different occasions she has cried and even wept because Esther was able to have her hair put in ponytails or bows, but she wasn't. I've bought Anya headbands & attaching bows, but to her they are not the same.
The other day we went to a garage sale and there was another little girl there with her mom. In front of Anya, the little girl said something to the effect of, "Mom, is that a little girl or a little boy because she doesn't have any hair?" On the way back to the car, I asked Anya if what the girl said had hurt her feelings. Anya replied, "No, it just made me feel funny inside." And my heart hurt for her, whose wouldn't?
And truthfully, it has been hard for me as a mom to see my little girl without hair, face swollen, and off and on out of sorts emotionally. So we will surely party when Anya has her hair back, long enough for bows, pig tails and ponytails!
Michele, Katie, & Maggie: Thanks for your "hair" prayers!
"Israel and Anna, Thank you for being vulnerable enough to share the rough times. It really touched my heart to hear Anya's sadness at not being able to have a ponytail - when I we pray at night for her - Katie & Maggie always ask for her to get her hair back."
Sometimes it seems so trivial to me to worry about such things when we have been blessed to still have Anya here. But it has really been emotionally challenging for her not to have hair, especially with the girly girl that she is. On different occasions she has cried and even wept because Esther was able to have her hair put in ponytails or bows, but she wasn't. I've bought Anya headbands & attaching bows, but to her they are not the same.
The other day we went to a garage sale and there was another little girl there with her mom. In front of Anya, the little girl said something to the effect of, "Mom, is that a little girl or a little boy because she doesn't have any hair?" On the way back to the car, I asked Anya if what the girl said had hurt her feelings. Anya replied, "No, it just made me feel funny inside." And my heart hurt for her, whose wouldn't?
And truthfully, it has been hard for me as a mom to see my little girl without hair, face swollen, and off and on out of sorts emotionally. So we will surely party when Anya has her hair back, long enough for bows, pig tails and ponytails!
Michele, Katie, & Maggie: Thanks for your "hair" prayers!
Tuesday Evening
At around 5:30pm this evening, while Israel and I were preparing for dinner in the kitchen, Anya laid down on the floor and began complaining of a headache. She said that she wasn't able to sit at the table and eat, so once food was ready I sat down with her to feed her. But after just a few bites, she threw up a couple times. It is so pitiful to see her sick. After being cleaned, she asked to be alone without the lights on in the living room with a movie.
Israel called the after hours number and the nurse said that we could bring Anya into the hospital or we could wait things out. She suggested that Anya may have a viral infection or a traditional migraine headache (though we doubt the latter because she's never had one of these before). We decided to just stay here at the house, where Anya will be most comfortable.
Anya fell asleep before her movie was over, a few hours before her normal bedtime. We will keep a close eye on her and pray that she will be better before the morning. Things have gone so smoothly since we've been home. Yet times like these, or yesterday when she broke down because she couldn't have a ponytail like Esther, are hard reminders of her condition. But we also remember that things could be much worse.
Israel called the after hours number and the nurse said that we could bring Anya into the hospital or we could wait things out. She suggested that Anya may have a viral infection or a traditional migraine headache (though we doubt the latter because she's never had one of these before). We decided to just stay here at the house, where Anya will be most comfortable.
Anya fell asleep before her movie was over, a few hours before her normal bedtime. We will keep a close eye on her and pray that she will be better before the morning. Things have gone so smoothly since we've been home. Yet times like these, or yesterday when she broke down because she couldn't have a ponytail like Esther, are hard reminders of her condition. But we also remember that things could be much worse.
Sunday, May 4, 2008
Maintenance Overview
Now that we have completed the first month of Maintenance we're beginning to get a fuller picture of what we can expect throughout the rest of Anya's treatment. The Maintenance phase is the last phase of Anya's treatment prior to her being pronounced "medically cured". As with all of Anya's treatments up to this point the Maintenance phase can be prolonged by delays caused by sickness or low counts. Praise God that we made it through month number one with no such delays! The Maintenance phase consists of:
-An oral chemo pill taken seven days a week (a pill and a half on weekend nights) that must be taken without food being consumed two hours before or after the pill is taken.
-An additional oral chemo drug (six tiny pills) taken every Friday night.
-A clinic visit once a month to recieve two chemo drugs through Anya's port.
-Five consecutive days of oral steroid pills each month that begin the day we go to the clinic.
-A spinal tap every other visit to the clinic (once every two months).
For the most part this is very manageable, and is definitely less intense than the previous ten months of treatment. Anya has made yet another development in the past month in that she now takes her oral meds without complaint, whining or fussing. She has always taken the pills in a tiny bite of food and her current choice is to take the pills stuffed into an olive! She gets one "yucky" olive, followed by one "yummy" one. She is really a trooper and it has been good to see her get past the displeasure of taking the pills.
So, the hardest part of Maintenance is the five days on steroids. We started steroids Wednesday night, so tomorrow (Monday) morning will be our last dose. While I believe she has dealt with them better this time around than last month the effects are still obvious. Her appetite has steadily increased and she now wants multiple snacks between meals (craves the carbs, salt, and protein). This makes her daily chemo pill hard for her as she must go several hours without eating. We try to be done with dinner by 6:30pm and then give her the meds right at bedtime. She really struggled tonight, begging for food off and on between 7:30 and 8:30pm, but she made it till bedtime and is now asleep. She was up eating in the middle of the night last night and we expect that again tonight.
Her moods have also shown the effects of the steroid. She is very fussy and needy, irritable, and much more prone to conflict with the other two kids. Again, I've seen improvement in this area even from last month's steroid run, but it is still very difficult to see her suffering. When she's not on the steroids she is so compliant, rational, sweet, and content. Seeing her change into a different person is heartbreaking for me. Thankfully we took the 9th of 10 doses tonight and the effects of the steroids will gradually wear off in the days to come.
Anya is looking forward to performing a "special" in church on Saturday, May 17th. She plans to sing and dance, although she hasn't decided between "I love you Lord" and "I have decided to follow Jesus". It is exciting to look forward to that and know that she will be in the frame of mind to do it when the time comes. She was miserable and unpredictable enough this past Saturday that Anna kept the kids home and I attended church alone.
Again, let me take an opportunity to thank each of you for your love, prayers and support. We cannot imagine a more loving and compassionate response to our situation than the one we have recieved. We are blessed beyond description as God has shown His provision through the hearts and hands of those who love us. Thank you for everything. We will do our best to keep you updated, though we are often consumed by the task of re-assimilating to life here in KC. Until next time, Good Night.
-An oral chemo pill taken seven days a week (a pill and a half on weekend nights) that must be taken without food being consumed two hours before or after the pill is taken.
-An additional oral chemo drug (six tiny pills) taken every Friday night.
-A clinic visit once a month to recieve two chemo drugs through Anya's port.
-Five consecutive days of oral steroid pills each month that begin the day we go to the clinic.
-A spinal tap every other visit to the clinic (once every two months).
For the most part this is very manageable, and is definitely less intense than the previous ten months of treatment. Anya has made yet another development in the past month in that she now takes her oral meds without complaint, whining or fussing. She has always taken the pills in a tiny bite of food and her current choice is to take the pills stuffed into an olive! She gets one "yucky" olive, followed by one "yummy" one. She is really a trooper and it has been good to see her get past the displeasure of taking the pills.
So, the hardest part of Maintenance is the five days on steroids. We started steroids Wednesday night, so tomorrow (Monday) morning will be our last dose. While I believe she has dealt with them better this time around than last month the effects are still obvious. Her appetite has steadily increased and she now wants multiple snacks between meals (craves the carbs, salt, and protein). This makes her daily chemo pill hard for her as she must go several hours without eating. We try to be done with dinner by 6:30pm and then give her the meds right at bedtime. She really struggled tonight, begging for food off and on between 7:30 and 8:30pm, but she made it till bedtime and is now asleep. She was up eating in the middle of the night last night and we expect that again tonight.
Her moods have also shown the effects of the steroid. She is very fussy and needy, irritable, and much more prone to conflict with the other two kids. Again, I've seen improvement in this area even from last month's steroid run, but it is still very difficult to see her suffering. When she's not on the steroids she is so compliant, rational, sweet, and content. Seeing her change into a different person is heartbreaking for me. Thankfully we took the 9th of 10 doses tonight and the effects of the steroids will gradually wear off in the days to come.
Anya is looking forward to performing a "special" in church on Saturday, May 17th. She plans to sing and dance, although she hasn't decided between "I love you Lord" and "I have decided to follow Jesus". It is exciting to look forward to that and know that she will be in the frame of mind to do it when the time comes. She was miserable and unpredictable enough this past Saturday that Anna kept the kids home and I attended church alone.
Again, let me take an opportunity to thank each of you for your love, prayers and support. We cannot imagine a more loving and compassionate response to our situation than the one we have recieved. We are blessed beyond description as God has shown His provision through the hearts and hands of those who love us. Thank you for everything. We will do our best to keep you updated, though we are often consumed by the task of re-assimilating to life here in KC. Until next time, Good Night.
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