Thursday, August 28, 2008
Hard Nights
Last night was a hard night. Over the course of the night Anya woke up five different times: because of a headache, stomach ache, and later vomiting on three seperate occassions. As she threw up, she was dry heaving, tired, and trembling yet she didn't really cry or fuss. She was such a trooper! I wish that she didn't have to go through such nights but I am so proud of her for how brave she is through it all...what a big girl!
Monday, August 25, 2008
August Update
We're back at the steroids again as of last Friday. As usual, Anya has been tired, moody, hungry, and cold. Anya typically experiences the same side effects each month, though it seems like sometimes something may bother her more one month than the other. This month, she has been especially cold. She has been bundled with blankets and a sweatshirt for most of today.
Her monthly clinic visit went very smoothly. She received her usual preventative antibiotic, medicine to sooth her stomach, and IV chemo medication. Her ANC (absolute neutropil count, or the number of a certain type of white blood cells in her body) was still high so they increased the dose of her daily chemo medication by one pill per week.
The past few months we have taken Anya to church on Saturday morning, even though she was on steroids, because she had only had three doses by that point and we knew that she enjoys going to sing to Jesus and to see friends. But this week we decided to keep her home - she seemed to do much better all day! The stimuli of leaving the house and being around so many people must have been wearing her out. So perhaps now we'll just keep her home each month. We'll see...
Israel's mom (otherwise known as "Mammy) and step-brother came to visit about a week and a half ago and just left this afternoon. It was nice for us to get to see them again and for the girls to get to bond with them a little bit. We only get to see Israel's family on rare occasions since they all live on the West Coast so visits are a real treat! Just before Mammy left, she bought Anya & Esther some fun craft supplies - we can't wait to use them! Thanks Mammy!
Here are some pictures of their visit:
Her monthly clinic visit went very smoothly. She received her usual preventative antibiotic, medicine to sooth her stomach, and IV chemo medication. Her ANC (absolute neutropil count, or the number of a certain type of white blood cells in her body) was still high so they increased the dose of her daily chemo medication by one pill per week.
The past few months we have taken Anya to church on Saturday morning, even though she was on steroids, because she had only had three doses by that point and we knew that she enjoys going to sing to Jesus and to see friends. But this week we decided to keep her home - she seemed to do much better all day! The stimuli of leaving the house and being around so many people must have been wearing her out. So perhaps now we'll just keep her home each month. We'll see...
Israel's mom (otherwise known as "Mammy) and step-brother came to visit about a week and a half ago and just left this afternoon. It was nice for us to get to see them again and for the girls to get to bond with them a little bit. We only get to see Israel's family on rare occasions since they all live on the West Coast so visits are a real treat! Just before Mammy left, she bought Anya & Esther some fun craft supplies - we can't wait to use them! Thanks Mammy!
Here are some pictures of their visit:
Wednesday, July 30, 2008
July Steroids Done!
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!
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!
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.
Monday, June 23, 2008
Relay For Life
On Friday, Anya and I were privileged to participate in Olathe, KS's annual "Relay for Life", sponsored by the American Cancer Society. She was honored as a "Cancer Survivor" and was given a free catered dinner for herself and a guest and was asked to walk with other survivors around the first lap. She was so proud to walk it by herself with her survivor friend that she met that night (see the third picture above). It was a very special night for both of us.
Sunday, June 8, 2008
Playset
We found a used wooden playset for the kids!!
Thank you to Jeff & Ken, two friends from our church, who helped Israel take it down, bring it to our house, and put everything back together. We couldn't have gotten one without you!
Thank you to Jeff & Ken, two friends from our church, who helped Israel take it down, bring it to our house, and put everything back together. We couldn't have gotten one without you!
This playset is such a special blessing for our family; it something I have hoped for and prayed for since before we even left Ohio. The steriods cause Anya to have a sometimes insatiable appetite and to retain water, and this playset will give her plenty of opportunity to get exercise even when we aren't able to make it to a park. And it gives our family lots of fun times outside together! We have already spent much time outside.
One time when we were outside, Anya told me that her swingset reminded her of the Heidi movie. When I asked her to clarify, she said that it was like her mountains. If you've watched Heidi you'll know that the mountains were a place of hope and healing for Heidi and her cousin. It may seem dramatic, but yes, the swingset is our moutains!
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