The port does not have to be removed! Anya was scheduled for surgery yesterday and had even started the necessary fast. But the culture results came back negative again yesterday morning so they cancelled it and she was allowed to start eating...yeah!
She was also scheduled to start chemo yesterday and to come home yesterday or this morning (Tuesday) but we weren't able to do either of these. Anya's healthy counts aren't quite where they need to be to start chemo (which depletes the healthy cells along with the leukemia cells). And they needed to keep her in the hospital to do some more IV antibiotics. So we are now hoping to start the chemo on Thursday or Monday and to go home on Thursday night or Friday morning.
Although we are disappointed about both of these things we praise God that the port did not have to be removed. And we praise Him because Anya is doing better emotionally in the hospital and in relationship to the nurses and doctors. She has been laughing and playing with Israel & I and even smiling at the nurses! She still doesn't like when they draw blood or when they wake her at night...but do any of us? :)
Tuesday, July 31, 2007
Thursday, July 26, 2007
To Whom Shall We Go?
The doctors have determined that Anya had a viral infection that did get in her lungs and a bacterial infection that originated in her port. The viral infection is under control; she has been fever free for a couple days now. However the bacterial infection that is in her port and therefore entering into her blood stream has not been eradicated.
The doctors know that the bacteria respond to the antibiotic in the lab so they are assuming that the med is just having difficulty clinging in the port and therefore not killing the source of the infection. They are now making a special effort to keep the antibiotics in the port for longer periods of time with the hope that it will kill the source of the infection. The doctors are willing to try this for a few more days but if it is not successful the port will have to be removed. We desperately do not want to have the port removed because it would require several additional procedures and extra "pokes" for a little girl who is already terrified & uncomfortable.
The second phase of treatment was scheduled to start this past Monday. Because Anya was ill with fever it has been postponed until this Monday. We are also hoping that the infection can be cleared with the new steps the doctors are taking so we can move on with her treatment. We are also hoping that Anya's body will respond well to the new drugs once they do begin, that she will be comfortable, and that she will not have to return to the hospital until she needs to do so for the portion of her chemo that requires it.
Thank you so much to those of you who have been praying for Anya. I know that it could be discouraging that seemingly God is not answering so many of the specific prayers that we are praying. No one wants Anya to be healed more than Israel or me. But like Peter I say, "Lord, to whom shall we go? You have the words of eternal life...we have come to believe and know that You are the Christ, the Son of the living God" (John 6:68)! Jesus is our comfort, our shield, our fortress, and our hope - without Him we are nothing! And while I trust that Anya will survive this I know that if even if she doesn't we have an even greater hope. We don't have to face death like those who do not know God for we would one day be reunited with Anya in eternity. And so I implore you to continue to stand with us, to beseech the Creator of heaven and earth on Anya's behalf for complete healing, and to come to know Jesus more with us as we all make this journey together.
The doctors know that the bacteria respond to the antibiotic in the lab so they are assuming that the med is just having difficulty clinging in the port and therefore not killing the source of the infection. They are now making a special effort to keep the antibiotics in the port for longer periods of time with the hope that it will kill the source of the infection. The doctors are willing to try this for a few more days but if it is not successful the port will have to be removed. We desperately do not want to have the port removed because it would require several additional procedures and extra "pokes" for a little girl who is already terrified & uncomfortable.
The second phase of treatment was scheduled to start this past Monday. Because Anya was ill with fever it has been postponed until this Monday. We are also hoping that the infection can be cleared with the new steps the doctors are taking so we can move on with her treatment. We are also hoping that Anya's body will respond well to the new drugs once they do begin, that she will be comfortable, and that she will not have to return to the hospital until she needs to do so for the portion of her chemo that requires it.
Thank you so much to those of you who have been praying for Anya. I know that it could be discouraging that seemingly God is not answering so many of the specific prayers that we are praying. No one wants Anya to be healed more than Israel or me. But like Peter I say, "Lord, to whom shall we go? You have the words of eternal life...we have come to believe and know that You are the Christ, the Son of the living God" (John 6:68)! Jesus is our comfort, our shield, our fortress, and our hope - without Him we are nothing! And while I trust that Anya will survive this I know that if even if she doesn't we have an even greater hope. We don't have to face death like those who do not know God for we would one day be reunited with Anya in eternity. And so I implore you to continue to stand with us, to beseech the Creator of heaven and earth on Anya's behalf for complete healing, and to come to know Jesus more with us as we all make this journey together.
Sunday, July 22, 2007
Anya & Esther
Well we found out earlier today that Anya does have a bacterial infection. We are now hoping that the infection is not in her lungs or in her port. She had a chest x-ray a few hours ago and has a procedure tomorrow; both should tell the doctors if the infection is in the chest.
She continues to have a fever, cough, & her breathing is shallow and somewhat rapid. We need her temperature to return to normal, her cough to clear, & her breathing to become normal.
The doctor now says we will be in the hospital for at least 4 days...maybe longer. As the doctor said, "Anya is smart". She understands what is going on and it makes things difficult for her. She becomes upset when the doctors come in the room and her overall demeanor is one of sadness while we are here. Please pray for her physical & emotional health.
Also, please pray for Esther. During the day she is usually cheery and energetic. But most nights she is up for several hours crying & upset - perhaps waking from bad dreams. The ER doctor said that leukemia treatment has made great strides in the past several years but it still takes a difficult toll on the whole family. Thus he was not surprised by her reaction; but we pray that God would give Esther and the rest of us comfort & peace.
(Also wanted to say thanks to my dad who has made trips to the hospital for the past two nights to bring food & other extras...I appreciate you!)
She continues to have a fever, cough, & her breathing is shallow and somewhat rapid. We need her temperature to return to normal, her cough to clear, & her breathing to become normal.
The doctor now says we will be in the hospital for at least 4 days...maybe longer. As the doctor said, "Anya is smart". She understands what is going on and it makes things difficult for her. She becomes upset when the doctors come in the room and her overall demeanor is one of sadness while we are here. Please pray for her physical & emotional health.
Also, please pray for Esther. During the day she is usually cheery and energetic. But most nights she is up for several hours crying & upset - perhaps waking from bad dreams. The ER doctor said that leukemia treatment has made great strides in the past several years but it still takes a difficult toll on the whole family. Thus he was not surprised by her reaction; but we pray that God would give Esther and the rest of us comfort & peace.
(Also wanted to say thanks to my dad who has made trips to the hospital for the past two nights to bring food & other extras...I appreciate you!)
Saturday, July 21, 2007
Back in the Hospital
This afternoon (Saturday) Anya was readmitted to the hospital with a cough and low-grade fever. After some initial tests the doctors are still trying to determine whether she has a virus that her body can fight off or a bacterial infection that will require antibiotics. As a precaution they have started her on antibiotics and will need to keep her at least 48 hours, perhaps longer if it is bacterial. Please pray that the problem would be viral and Anya would be released as soon as possible. She was improving so dramatically this week at home but truly hates being in the hospital. Please pray that her time there would be as short as possible and that Anna and I would have the strength to stay with her there again. I have been in Kansas City for a few days to gather some things and will be driving back to KC all day tomorrow (Sunday). Praise God for a wonderful visit here with our church family. We covet your prayers!
Wednesday, July 18, 2007
Remission!
The results of Anya's bone marrow aspirate from yesterday showed that the number of leukemia blasts in her bone marrow is under 5%, which means she has entered remission! Praise the Lord! While this is wonderful news and definitely an answer to prayers it is by no means the end of the road, nor is it a surprise to the doctors. The goal all along has been for Anya to enter remission by the end of the Induction Phase (scheduled to last 4-6 weeks). Monday completed the fourth week of treatment, so Anya is on schedule and can begin her second phase of treatment. This transition to the next phase is marked by some very encouraging developments.
Ever since Anya came home the two hardest things have been keeping up with her constant and frequently changing needs and administering her medicines. Now that she has finished week four of treatment she no longer needs to take the steroid that she was on (Dexamethasone). This steroid (2 pills taken by mouth twice a day) was the cause of Anya's moodiness, irritability, and incredible appetite/craving for salt, carbs, and protein. As a result of this steroid she also had to take Miralax (a laxative), and Lactulose (a stool softener) to keep her bowels moving, and Prevacid to reduce heartburn. Provided she does not have any problems with bowel movements and heartburn the next few days we can phase out of these meds. The other meds she was on can also be phased out this week. Fluconazole is being taken to avoid infection, but with Anya's healthy white blood cell counts way up her risk of infection has significantly decreased, so the Fluconazole can be discontinued this week as well. Anya was recieving Atarax to keep a rash from spreading, but the rash has disappeared (praise God!) and she can go off of the Atarax this week as long as it does not return.
We have already noticed a significant difference in Anya after being off the steroid for a day. Her moods have become more even and she has laughed quite a bit more. Her appetite has reduced significantly, although she is still eating quite a bit more than she did before she was sick. Although she is more mobile/active than before she is still in bed most of the day watching TV. We make her walk from room to room throughout the day, but she cries each time she walks, partly from fear and partly from the muscular atrophy throughout her body as a result of laying in bed for the past month. We are excited each time we see a little bit of Anya's personality return, and it seems that she is becoming herself a little more each day.
Unless the Lord heals Anya we still have a LONG road ahead of us. The goal is to keep the leukemia in remission for the next 3-5 years. If that can be done then Anya's chance of relapsing will be almost nill. However, at any time in the next 3-5 years Anya could relapse which would be a serious setback to her recovery. She still requires almost constant attention and care and is making weekly trips to the clinic and hospital. We still desparately need your love and prayers and are so grateful for all you have done. We will continue to keep you updated as we learn new things.
Ever since Anya came home the two hardest things have been keeping up with her constant and frequently changing needs and administering her medicines. Now that she has finished week four of treatment she no longer needs to take the steroid that she was on (Dexamethasone). This steroid (2 pills taken by mouth twice a day) was the cause of Anya's moodiness, irritability, and incredible appetite/craving for salt, carbs, and protein. As a result of this steroid she also had to take Miralax (a laxative), and Lactulose (a stool softener) to keep her bowels moving, and Prevacid to reduce heartburn. Provided she does not have any problems with bowel movements and heartburn the next few days we can phase out of these meds. The other meds she was on can also be phased out this week. Fluconazole is being taken to avoid infection, but with Anya's healthy white blood cell counts way up her risk of infection has significantly decreased, so the Fluconazole can be discontinued this week as well. Anya was recieving Atarax to keep a rash from spreading, but the rash has disappeared (praise God!) and she can go off of the Atarax this week as long as it does not return.
We have already noticed a significant difference in Anya after being off the steroid for a day. Her moods have become more even and she has laughed quite a bit more. Her appetite has reduced significantly, although she is still eating quite a bit more than she did before she was sick. Although she is more mobile/active than before she is still in bed most of the day watching TV. We make her walk from room to room throughout the day, but she cries each time she walks, partly from fear and partly from the muscular atrophy throughout her body as a result of laying in bed for the past month. We are excited each time we see a little bit of Anya's personality return, and it seems that she is becoming herself a little more each day.
Unless the Lord heals Anya we still have a LONG road ahead of us. The goal is to keep the leukemia in remission for the next 3-5 years. If that can be done then Anya's chance of relapsing will be almost nill. However, at any time in the next 3-5 years Anya could relapse which would be a serious setback to her recovery. She still requires almost constant attention and care and is making weekly trips to the clinic and hospital. We still desparately need your love and prayers and are so grateful for all you have done. We will continue to keep you updated as we learn new things.
Sunday, July 15, 2007
Monday is a Big Day
This has been a fairly uneventful week. Anya continues to be fever free, yeah! Yet she is still uncomfortable, her fingers & toes tingle as a side effect from a medicine, and she is very unhappy most of the time.
The other day while I was in the kitchen washing dishes I overheard Anya & Israel in the living room talking on the couch. She was giggling at the silly things he was saying and it was like sweet music to my ears. I stopped working and stood in the doorway crying silently in thanksgiving for her laughter but also heartbroken that it isn't more common.
This morning started out well for her. She had an uninterrupted night's sleep and was able to talk with Israel some about leukemia and the future. However later she was very disappointed when she wasn't able to go to church with the rest of the family. She cried for a while after everyone else left and it took work for me to distract her from thinking about her daddy being gone. I think she is ready for life to be back to normal.
Tomorrow (Monday) is going to be a hard & big day. Anya is not allowed to eat after 9am because she will be sedated in the afternoon for a spinal tap and bone marrow aspirate. Please pray that she is in remission so that we can procede with the remainder of her treatment. And please pray for her peace while she is fasting. She eats about 3 times as much as before she was on steroids so being without food all day will be a struggle for her.
The other day while I was in the kitchen washing dishes I overheard Anya & Israel in the living room talking on the couch. She was giggling at the silly things he was saying and it was like sweet music to my ears. I stopped working and stood in the doorway crying silently in thanksgiving for her laughter but also heartbroken that it isn't more common.
This morning started out well for her. She had an uninterrupted night's sleep and was able to talk with Israel some about leukemia and the future. However later she was very disappointed when she wasn't able to go to church with the rest of the family. She cried for a while after everyone else left and it took work for me to distract her from thinking about her daddy being gone. I think she is ready for life to be back to normal.
Tomorrow (Monday) is going to be a hard & big day. Anya is not allowed to eat after 9am because she will be sedated in the afternoon for a spinal tap and bone marrow aspirate. Please pray that she is in remission so that we can procede with the remainder of her treatment. And please pray for her peace while she is fasting. She eats about 3 times as much as before she was on steroids so being without food all day will be a struggle for her.
Thursday, July 12, 2007
Overwhelmed!
Given our situation you might think that this blog entry is titled Overwhelmed! because of the trial we're going through. But you'd be wrong!
The overwhelming part is the incredible amount of support that we have recieved from freinds, family, loved ones, and more often than you'd believe, complete strangers. Every day we wait expectantly for the mail and then open the cards, gifts, packages, and letters that arrive. Each day we are simply shocked by the love, tenderness, kindness, and generosity of so many people from across the country. We simply cannot express our gratitude to those who have sent things to us in the mail, not to mention the numerous emails we have received to encourage us. We are just amazed and humbled. Every day we sit here opening the mail and smiling, sometimes crying for joy, and looking at each other in shock.
I do not know what it would be like to endure this time without your love and support, but I know that you have all brought us a great deal of hope, joy, and life in the midst of a very difficult ordeal. We do not have words to express our gratitude, so let us simply say, Thank You. May God give treasures in heaven to each of you for the treasures you have passed on to us.
With all our love,
The Steinmetz Family
The overwhelming part is the incredible amount of support that we have recieved from freinds, family, loved ones, and more often than you'd believe, complete strangers. Every day we wait expectantly for the mail and then open the cards, gifts, packages, and letters that arrive. Each day we are simply shocked by the love, tenderness, kindness, and generosity of so many people from across the country. We simply cannot express our gratitude to those who have sent things to us in the mail, not to mention the numerous emails we have received to encourage us. We are just amazed and humbled. Every day we sit here opening the mail and smiling, sometimes crying for joy, and looking at each other in shock.
I do not know what it would be like to endure this time without your love and support, but I know that you have all brought us a great deal of hope, joy, and life in the midst of a very difficult ordeal. We do not have words to express our gratitude, so let us simply say, Thank You. May God give treasures in heaven to each of you for the treasures you have passed on to us.
With all our love,
The Steinmetz Family
Subscribe to:
Posts (Atom)
