Anya's rash has now worsened and become pretty itchy. There are times when she just cries because it itches her so badly. The doctors suggested that we try Benadryl, and it seems to help - especially when we use the higher end of the allowed dosage.
While getting dressed for the day yesterday morning, Anya asked if I could put her hair in pigtails. After I finished, she asked to look in a mirror and for the first time saw the rash covering her nose and cheeks. In a frustrated tone she said, "I look ridiculous with this rash on my face!" As a mom, of course, I tried to reassure that she was beautiful and that the rash didn't distract from that.
Later I shared the experience with Israel and he said that she had also asked him if she still looked pretty with the rash on her face. Of course, he reassured her as well but was now realizing our need to try and use this and similar experiences to teach her that there are times when our external appearance is affected by things like sickness or tragedies, but that we need to keep such things in perspective because our physical appearance is really such a small part of who we are and what we are supposed to be. I was so thankful for that realization!
So later as Anya and I were laying down for an afternoon nap, I took the opportunity to discuss the values of external and internal beauty and how it directly applied to her situation. I reaffirmed that she was a beautiful girl, but that we needed not to be so focused on external appearance knowing that life experiences may negatively affect the way other people think we look but that what is most important is what is in our heart. And I had to take the opportunity to apologize for being inappropriately concerned with some of the physical changes that come with pregnancy and aging and told her that I would try to be a better example in the future. Wow, what a lot to try to explain to a little five year old girl. But I think she got it, and I'm thankful Israel saw this important opportunity!
Wednesday, March 18, 2009
Monday Lab Work
On Sunday, we discovered a rash developing under Anya's arm on her rib cage. She was only slightly itchy so we decided to wait to report it to her doctor on Monday, during her scheduled follow-up lab work.
Once we arrived at the clinic on Monday, in order to protect the other children, Anya was placed in an isolation room and wasn't allowed to go into the playroom. And as a mom who is sometimes on the other side of the fence - I was very grateful!
After the nurse inspected Anya and the lab results came back, the nurse told us that the rash was probably a viral thing and that it was probably what caused the abnormal spike in her enzyme levels last week. They also said that her enzyme levels were now much closer to normal (only slightly elevated). All of the other numbers they check were in a safe range, so the doctors told us to put Anya back on her daily chemo meds.
Once we arrived at the clinic on Monday, in order to protect the other children, Anya was placed in an isolation room and wasn't allowed to go into the playroom. And as a mom who is sometimes on the other side of the fence - I was very grateful!
After the nurse inspected Anya and the lab results came back, the nurse told us that the rash was probably a viral thing and that it was probably what caused the abnormal spike in her enzyme levels last week. They also said that her enzyme levels were now much closer to normal (only slightly elevated). All of the other numbers they check were in a safe range, so the doctors told us to put Anya back on her daily chemo meds.
Thursday, March 12, 2009
March Appointment
Last Friday was Anya's scheduled monthly appointment. Most of the morning before she arrived in the procedure room, she was crying because she wasn't able to eat and was tired. But thankfully she was able to fall back to sleep after she & Israel got settled in the room, and woke up feeling much better after everything was finished. And by the time she got home, she was cheerful!
Later that day we received a call from Joy, Anya's nurse. Apparently Anya's liver enzyme level was elevated which means that her liver was fighting to clear something out (which probably explains why she had been so tired the couple days previous). According to the doctor it was most likely trying to clear out whatever virus she had in the last month or so.
Because her daily chemo is filtered through her liver and the doctors don't wish to work her liver more than necessary, they asked us to discontinue her daily chemo medication (while continuing her five days of steroids). They also asked us to bring Anya back in on Monday the 16th for more lab work so they can check to see if her levels have returned to normal, and to see if they can detect a virus that may have caused the problem.
Anya completed her five days of steroids on Wednesday morning, praise the Lord! Some rounds of steroids are harder than others, and I would say that this one was more difficult than some. She was up through the night unable to sleep three different nights - poor thing! One morning she even apologized for having to wake me up in the night - what a sweet princess!
Wednesday was the first night in as long as I can remember that she didn't have to take medication. I must admit that it was kind of nice. Of course, in the big picture, we want her to be able to take as much chemo as possible to make sure that the leukemia does not return. But in the short term, the break was great! So we'll enjoy these few days of medicine free living as much as possible!
Later that day we received a call from Joy, Anya's nurse. Apparently Anya's liver enzyme level was elevated which means that her liver was fighting to clear something out (which probably explains why she had been so tired the couple days previous). According to the doctor it was most likely trying to clear out whatever virus she had in the last month or so.
Because her daily chemo is filtered through her liver and the doctors don't wish to work her liver more than necessary, they asked us to discontinue her daily chemo medication (while continuing her five days of steroids). They also asked us to bring Anya back in on Monday the 16th for more lab work so they can check to see if her levels have returned to normal, and to see if they can detect a virus that may have caused the problem.
Anya completed her five days of steroids on Wednesday morning, praise the Lord! Some rounds of steroids are harder than others, and I would say that this one was more difficult than some. She was up through the night unable to sleep three different nights - poor thing! One morning she even apologized for having to wake me up in the night - what a sweet princess!
Wednesday was the first night in as long as I can remember that she didn't have to take medication. I must admit that it was kind of nice. Of course, in the big picture, we want her to be able to take as much chemo as possible to make sure that the leukemia does not return. But in the short term, the break was great! So we'll enjoy these few days of medicine free living as much as possible!
Monday, February 9, 2009
Counts Back Up!
Anya's February appointment was Friday at 9:30am. She received intravenous chemo, a preventative antibiotic, and had lab work. The lab results were great! Anya's counts are back up, and the doctor has allowed her to go back onto her full prescription of chemo! Praise God!
Of course since her appointment was Friday, Anya also started her steroids on Friday. I usually prefer to keep her home from church while on steroids but Anya was persistent that she wanted to go to church...so we did. How can I say "no" to a child begging to go to church?
Overall she did really well there, though during the singing she had to lie down and she was pretty fussy and uncomfortable for the rest of the service. I offered several times to take her home, but she didn't want to go so we just toughed it out.
On Sunday afternoon Israel was able to take Anya to a friend's house to play since her counts have gone back up. But she was so tired and sensitive that I don't think she had as great a time as we had hoped. When she isn't feeling well noise and light can really bother her.
So both yesterday and today, for the most part she has wanted to rest, watch TV (more specifically "Little House on the Prairie"), eat the usual salty fatty foods, and read books. Poor thing, for her sake, I can't wait till we're done with steroids!
Of course since her appointment was Friday, Anya also started her steroids on Friday. I usually prefer to keep her home from church while on steroids but Anya was persistent that she wanted to go to church...so we did. How can I say "no" to a child begging to go to church?
Overall she did really well there, though during the singing she had to lie down and she was pretty fussy and uncomfortable for the rest of the service. I offered several times to take her home, but she didn't want to go so we just toughed it out.
On Sunday afternoon Israel was able to take Anya to a friend's house to play since her counts have gone back up. But she was so tired and sensitive that I don't think she had as great a time as we had hoped. When she isn't feeling well noise and light can really bother her.
So both yesterday and today, for the most part she has wanted to rest, watch TV (more specifically "Little House on the Prairie"), eat the usual salty fatty foods, and read books. Poor thing, for her sake, I can't wait till we're done with steroids!
Saturday, January 24, 2009
Counts Back Down
Israel took Anya to the clinic on Friday morning for her follow-up lab work. Unfortunately her ANC is back down (.628 or 628) and so again she is susceptible to infection.
She has a little cold right now, and we are thankful that it has not developed into something worse. She has no fever, but if that were to change we have to call the doctors immediately so that they can determine if she needs additional medical care.
The bummer about all of this is that we have to be real cautious with where we take Anya and who she is around. We allowed her to go to church today, but she wasn't able to play with the other children or mingle around with people. During the greeting time, she had to stay in her seat and it broke her little heart...this of course, breaks ours.
And we were supposed to have people over this evening for a Young Adult Meeting, including a couple kids, but we had to change the location of the meeting since Anya shouldn't be around a lot of people. Again...bummer.
The good news is that her other counts are within the acceptable range, so we don't have to fear relapse. Her low ANC is a result of her body trying to fight off all of the seasonal colds and other infections that come around. She is still on a half dose of the chemo and will be reevaluated on Feb 6 to make sure that the ANC count is recovering, or at the very least staying above .500. Thanks again for all your prayers! And please continue to pray that her counts would be high enough that she would be able to play freely with other kids and spend time with the folks that she cares so much about.
She has a little cold right now, and we are thankful that it has not developed into something worse. She has no fever, but if that were to change we have to call the doctors immediately so that they can determine if she needs additional medical care.
The bummer about all of this is that we have to be real cautious with where we take Anya and who she is around. We allowed her to go to church today, but she wasn't able to play with the other children or mingle around with people. During the greeting time, she had to stay in her seat and it broke her little heart...this of course, breaks ours.
And we were supposed to have people over this evening for a Young Adult Meeting, including a couple kids, but we had to change the location of the meeting since Anya shouldn't be around a lot of people. Again...bummer.
The good news is that her other counts are within the acceptable range, so we don't have to fear relapse. Her low ANC is a result of her body trying to fight off all of the seasonal colds and other infections that come around. She is still on a half dose of the chemo and will be reevaluated on Feb 6 to make sure that the ANC count is recovering, or at the very least staying above .500. Thanks again for all your prayers! And please continue to pray that her counts would be high enough that she would be able to play freely with other kids and spend time with the folks that she cares so much about.
Thursday, January 15, 2009
Good news!
Anya went in for bloodwork this morning and her ANC has gone back up into the normal range, confirming the doctors' suspicion that the problem was simply lowered counts as a result of fighting off infections, and nothing more serious.
We start Anya back on her chemo this week at about half the dosage and will have another appointment next week to make sure she is ready to go back to full strength. Her color and energy have returned throughout the week (she was looking pretty pale and fatigued over the weekend) and she is happy to be off of the steroids until next month.
We are so thankful for all the prayers and support this week. We are also again thankful to God that this delay was so short. So many children suffering from leukemia spend weeks at a time in the hospital with infections while their treatment is delayed. This week-long break in the treatment is the first delay we've experienced since we returned home in April and we were able to spend it at home with Anya in good health, despite the fact that she was essentially functioning without an immune system. Praise God for so many healthy months!
We start Anya back on her chemo this week at about half the dosage and will have another appointment next week to make sure she is ready to go back to full strength. Her color and energy have returned throughout the week (she was looking pretty pale and fatigued over the weekend) and she is happy to be off of the steroids until next month.
We are so thankful for all the prayers and support this week. We are also again thankful to God that this delay was so short. So many children suffering from leukemia spend weeks at a time in the hospital with infections while their treatment is delayed. This week-long break in the treatment is the first delay we've experienced since we returned home in April and we were able to spend it at home with Anya in good health, despite the fact that she was essentially functioning without an immune system. Praise God for so many healthy months!
Friday, January 9, 2009
January Update
I (Israel) took Anya in this morning for her monthly appointment and quarterly spinal tap. Thankfully the spinal tap went very smoothly! The pain medication was regulated, and Anya lay calmly throughout the whole procedure! There was none of the resistance or crying that had occurred with the first two since we returned to KC.
This was a HUGE blessing for me. While Anya does not remember any of the spinal taps, even when it hurts, it has been very difficult for me to watch her suffer while the doctors attempted to find the ideal dosage of the pain killers (which Anya refers to as her "sleepy medicine" and "silly medicine").
While the doctors said that Anya looked great overall, her Absolute Neutrophil Count (ANC) was down to almost zero (.01). This means means that she has very few white blood cells to fight infection. Since chemotherapy kills white blood cells while killing leukemia cells, the doctors instructed us to withhold her chemo for the next week. We will take her back on Thursday for blood work to see if her counts have recovered.
According to the doctors, if all of Anya's blood counts were lowered, there would be reason to believe that the leukemia had returned. Because only her ANC has been affected, they suspect that in the midst of cold and flu season Anya's body's white blood cell supply has been tapped out by the combination of chemo and fighting illness. While Anya has not been symptomatic the low count may indicate that her body is fighting something.
So for this week we're back to trying to keep things as sterile as possible and limiting Anya's exposure to public places. And we are praying that Anya is in fact still in remission, and that the white blood count will increase by her next appointment.
She begins steroids tonight for five days, so she won't be fit to go out and do a whole lot anyway, but it is disappointing in that she planned to attend church tomorrow and have friends over tomorrow night. That will have to happen another time. We had begun to forget what it was like to quarantine ourselves...this week should remind us and help us to be even more grateful when her counts go back up and she can come and go as she pleases.
As always we want to express our gratitude for your ongoing love and support, and solicit your continued prayers. This week would you join us praying specifically that Anya's lowered count is not an indication of a serious problem, and that things will be back to normal when we go in next week?
Also, I plan to travel to northern California on Friday to preach for a special service there. Please pray that God would give me safe travel and the words to speak as I minister. We love you all.
This was a HUGE blessing for me. While Anya does not remember any of the spinal taps, even when it hurts, it has been very difficult for me to watch her suffer while the doctors attempted to find the ideal dosage of the pain killers (which Anya refers to as her "sleepy medicine" and "silly medicine").
While the doctors said that Anya looked great overall, her Absolute Neutrophil Count (ANC) was down to almost zero (.01). This means means that she has very few white blood cells to fight infection. Since chemotherapy kills white blood cells while killing leukemia cells, the doctors instructed us to withhold her chemo for the next week. We will take her back on Thursday for blood work to see if her counts have recovered.
According to the doctors, if all of Anya's blood counts were lowered, there would be reason to believe that the leukemia had returned. Because only her ANC has been affected, they suspect that in the midst of cold and flu season Anya's body's white blood cell supply has been tapped out by the combination of chemo and fighting illness. While Anya has not been symptomatic the low count may indicate that her body is fighting something.
So for this week we're back to trying to keep things as sterile as possible and limiting Anya's exposure to public places. And we are praying that Anya is in fact still in remission, and that the white blood count will increase by her next appointment.
She begins steroids tonight for five days, so she won't be fit to go out and do a whole lot anyway, but it is disappointing in that she planned to attend church tomorrow and have friends over tomorrow night. That will have to happen another time. We had begun to forget what it was like to quarantine ourselves...this week should remind us and help us to be even more grateful when her counts go back up and she can come and go as she pleases.
As always we want to express our gratitude for your ongoing love and support, and solicit your continued prayers. This week would you join us praying specifically that Anya's lowered count is not an indication of a serious problem, and that things will be back to normal when we go in next week?
Also, I plan to travel to northern California on Friday to preach for a special service there. Please pray that God would give me safe travel and the words to speak as I minister. We love you all.
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