Last night was the last of Anya's steroids for the month! Nothing really new to report, as usual she has felt sick to her stomach and had a small appetite in the mornings and then melancholy, and hungry through the rest of the day. She was only up through the night once or twice this time around...yeah!
We decided we are going to have a small victory party to celebrate completing this round of steroids on Friday night - pizza and family time!
Wednesday, July 30, 2008
Smooth Clinic Visit
Anya had her monthly clinic appointment last Friday and things went very well. The medical staff didn't have any trouble accessing her port, like they did last time, praise the Lord. She had a good time playing in the playroom and made several crafts.
Her healthy blood cell counts are higher than the doctors like them to be during this stage so they have upped one of her chemo medications. If we go back again and the counts are still higher, the doctors will up the daily chemo medication.
We also found out that Anya's last day of treatment is October 25, 2009. When the doctor told me this date, it was hard moment for me. I guess I had hoped that we were further along and that we were around the year mark. I just can't wait for all of this to be over. I feel for the mothers and fathers who have children with lifelong health problems, may God give them the strength and joy they need to endure.
Her healthy blood cell counts are higher than the doctors like them to be during this stage so they have upped one of her chemo medications. If we go back again and the counts are still higher, the doctors will up the daily chemo medication.
We also found out that Anya's last day of treatment is October 25, 2009. When the doctor told me this date, it was hard moment for me. I guess I had hoped that we were further along and that we were around the year mark. I just can't wait for all of this to be over. I feel for the mothers and fathers who have children with lifelong health problems, may God give them the strength and joy they need to endure.
Tuesday, July 8, 2008
July Appointment & Steroids
Sorry this post is about a week late, but it's been a pretty crazy time for us the last two weeks. Anya went in for her monthly appointment about ten days ago and had her first spinal tap here in Missouri (after recieving around 15 of them in Ohio). In Ohio she was placed under conscious sedation, appeared to be asleep, felt nothing, remembered nothing, and experienced no pain and relatively little discomfort during the procedure and afterward. However, here in Missouri they use a different type of medicine to numb the pain, and she is still awake and somewhat interactive.
Apparently different children respond to different doses of the medicine and unfortunately they did not establish what Anya's ideal dosage was at any point during the procedure. As a result she experienced a great deal of pain during her spinal tap. It was extremely difficult for me (Israel) to see Anya suffering...I had grown very accustomed to her not crying about anything that happened at the hospital. Thankfully the medicine causes memory loss for the time that she was on it, so after about an hour she could no longer remember anything that hurt, or any of the other experiences she had while medicated. The doctors expressed regret for what had happened, it was not what they had anticipated. They will attempt to regulate the dosage better next time (in three months) so that Anya does not experience any pain.
The day at the hospital had a few more mishaps in addition to the problems with the spinal tap. Apparently I fed Anya too much, too fast after the procedure because she vomited. This was pretty hard on her as she had not been allowed to eat prior to the procedure and then lost everything that she had been allowed to eat afterward. She ended up having to be satisfied with small amounts of juice and crackers for a couple hours. Also, while I had packed a change of clothes for her I had not done the same for myself, and ended up walking around with puke on me the rest of the day!
To make matters worse they were unable to get a blood draw from Anya's port (they have had difficulty each of the last three times we have come in) and finally sent her to get an X-ray done on the port to see if there was a blockage. Thankfully all was well and when we got back from the X-ray room they tried again and finally got a good blood return. This allowed them to take blood labs and administer the rest of her medicine. We had arrived at the hospital at 8:15am and left around 4:30pm. Quite a bit longer day than we expected going in!
Anya held up well on this last round of steroids (which started the night of her appointment and lasted five days). Each month she has learned to manage the mood swings better, but there is still definite evidence that her emotions are subject to an outside influence. She is moody, needy, and easily upset while taking the steroids. One major change this month is that she was having stomach trouble while she was on the steroids which kept her from eating as much as she normally would. She still had an increased appetite, but because she often felt sick to her stomach she did not always want to eat. We administered a medicine to help her stomach feel better, but it has a side effect of headaches, and she has been suffering with them lately. So, we're trying to find the right balance of each of the drugs to help her deal with symptoms without creating too many side-effects.
The day Anya finished steroids (last Wednesday) I left for the weekend to preach and teach at a youth conference in Tennessee. Anna (also known as SuperMom) stayed behind and did an excellent job caring for the kids. It's been an eventful month for us as we've entertained out of town guests each of the past four weekends. I'm so thankful for my wife and her incredible homemaking abilities! I got back home Sunday morning and am happy to be reunited with my family. The past few nights Anya has struggled to fall asleep, as she has really been missing freinds and family. She just lays and cries and is difficult to console. Of course this is very heartbreaking for us and we ask that you would pray that God would bring her comfort.
Overall we are doing well, trusting the Lord and relying on the support of so many faithful friends. Esther and Isaiah continue to grow and develop, and we are thankful to see Esther becoming more and more spiritually aware. We covet your prayers for our family, especially that God would give Anna and I the strength and wisdom to be good parents and spouses. Thank you for your continued love and support.
Apparently different children respond to different doses of the medicine and unfortunately they did not establish what Anya's ideal dosage was at any point during the procedure. As a result she experienced a great deal of pain during her spinal tap. It was extremely difficult for me (Israel) to see Anya suffering...I had grown very accustomed to her not crying about anything that happened at the hospital. Thankfully the medicine causes memory loss for the time that she was on it, so after about an hour she could no longer remember anything that hurt, or any of the other experiences she had while medicated. The doctors expressed regret for what had happened, it was not what they had anticipated. They will attempt to regulate the dosage better next time (in three months) so that Anya does not experience any pain.
The day at the hospital had a few more mishaps in addition to the problems with the spinal tap. Apparently I fed Anya too much, too fast after the procedure because she vomited. This was pretty hard on her as she had not been allowed to eat prior to the procedure and then lost everything that she had been allowed to eat afterward. She ended up having to be satisfied with small amounts of juice and crackers for a couple hours. Also, while I had packed a change of clothes for her I had not done the same for myself, and ended up walking around with puke on me the rest of the day!
To make matters worse they were unable to get a blood draw from Anya's port (they have had difficulty each of the last three times we have come in) and finally sent her to get an X-ray done on the port to see if there was a blockage. Thankfully all was well and when we got back from the X-ray room they tried again and finally got a good blood return. This allowed them to take blood labs and administer the rest of her medicine. We had arrived at the hospital at 8:15am and left around 4:30pm. Quite a bit longer day than we expected going in!
Anya held up well on this last round of steroids (which started the night of her appointment and lasted five days). Each month she has learned to manage the mood swings better, but there is still definite evidence that her emotions are subject to an outside influence. She is moody, needy, and easily upset while taking the steroids. One major change this month is that she was having stomach trouble while she was on the steroids which kept her from eating as much as she normally would. She still had an increased appetite, but because she often felt sick to her stomach she did not always want to eat. We administered a medicine to help her stomach feel better, but it has a side effect of headaches, and she has been suffering with them lately. So, we're trying to find the right balance of each of the drugs to help her deal with symptoms without creating too many side-effects.
The day Anya finished steroids (last Wednesday) I left for the weekend to preach and teach at a youth conference in Tennessee. Anna (also known as SuperMom) stayed behind and did an excellent job caring for the kids. It's been an eventful month for us as we've entertained out of town guests each of the past four weekends. I'm so thankful for my wife and her incredible homemaking abilities! I got back home Sunday morning and am happy to be reunited with my family. The past few nights Anya has struggled to fall asleep, as she has really been missing freinds and family. She just lays and cries and is difficult to console. Of course this is very heartbreaking for us and we ask that you would pray that God would bring her comfort.
Overall we are doing well, trusting the Lord and relying on the support of so many faithful friends. Esther and Isaiah continue to grow and develop, and we are thankful to see Esther becoming more and more spiritually aware. We covet your prayers for our family, especially that God would give Anna and I the strength and wisdom to be good parents and spouses. Thank you for your continued love and support.
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