We have a couple of little cancer friends who are in particular need of prayer right now:
Hannah Cate has Down syndrome and is being treated for bi-lineage leukemia (AML/ALL). She is undergoing a particularly difficult part of treatment for the next 3 to 4 weeks and is in the hospital with very low counts and terrible mouth sores that are preventing her from eating and drinking. She REALLY wants to go home (she is also one of six homeschooled children), but can't until her counts get better and she can eat and drink on her own.
Ricky James III is a little boy whose family we fished with at Camp Sunshine back in March. He was initially diagnosed with Rhabdosarcoma last April 1st. When we met him, he had recently completed treatment and this past week they learned that the cancer has come back. He started his new treatment yesterday. His third birthday is tomorrow.
Thanks praying friends. You bless our socks off! Have a wonderful, restful Lord's day... and Happy June!
Love, Stephanie and the crew
Saturday, May 31, 2008
Thursday, May 29, 2008
Counts and chemo at home
Yesterday was Vern's last day of teacher post-planning at work and this morning he was up and at our lengthy summer to-do list. He had Owen in tow most of the time and the little girls some of the time. Katie ran the house and Hannah and I bugged out with James. His g-tube looked so good this morning (still healing, definitely better even than yesterday morning, PTL, and certainly not as bad as it was earlier in the week, again PTL!) that we decided to take him to Macon for counts. This is a FIRST! The first chemo the week following steroids that we are HOME.
Okay, maybe that's a little over the top... but only a very little ;*)...
James' counts are WBC- 6.34; Hgb- 9.7; platelets 299K; ANC- 4,000+. So chemo goes as scheduled.
On the way to Macon this morning, Hannah and I were talking about the impressive turn around in James' g-tube site and we both think that several things factor in... 1st all the prayer and with that the mercy and wisdom for the rest of the factors ;*); James has been eating more and drinking some and we have been able to keep him hydrated using his g-tube at a higher feeding rate because the vincristine isn't slowing down his intestines like it has in the past. This means that we are able to give James long breaks without using the g-tube (less pressure on the site) and helps with healing. Finally, we do think that the prednisone MAY have helped, but if the other things hadn't happened the way they did, we would have likely been in the same situation as in the past with eroding (based on what we saw earlier in the week).
We have enjoyed a slew of old movies from our old-movie collecting neighbors so that James could spend a lot of time resting on the couch.
We continue to be so grateful for your prayers and concern for us and for James. The Lord bless y'all real good!
Love, Stephanie
Okay, maybe that's a little over the top... but only a very little ;*)...
James' counts are WBC- 6.34; Hgb- 9.7; platelets 299K; ANC- 4,000+. So chemo goes as scheduled.
On the way to Macon this morning, Hannah and I were talking about the impressive turn around in James' g-tube site and we both think that several things factor in... 1st all the prayer and with that the mercy and wisdom for the rest of the factors ;*); James has been eating more and drinking some and we have been able to keep him hydrated using his g-tube at a higher feeding rate because the vincristine isn't slowing down his intestines like it has in the past. This means that we are able to give James long breaks without using the g-tube (less pressure on the site) and helps with healing. Finally, we do think that the prednisone MAY have helped, but if the other things hadn't happened the way they did, we would have likely been in the same situation as in the past with eroding (based on what we saw earlier in the week).
We have enjoyed a slew of old movies from our old-movie collecting neighbors so that James could spend a lot of time resting on the couch.
We continue to be so grateful for your prayers and concern for us and for James. The Lord bless y'all real good!
Love, Stephanie
Wednesday, May 28, 2008
Oh, me, of little faith
Well, we are still home, PTL!
Monday night, it was clear that James' g-tube site was eroding. Hannah, Vern and I figured it was 'just a matter of time' again. And it still may be... but Vern said on Tuesday morning that he wanted us to get James seen soon. Tuesday preferably, Wednesday at the latest. I tried to get things worked out for yesterday and by the end of the day, his g-tube site didn't look any worse to me than it had in the morning.
This morning, PTL, it actually looked better in most regards. So we will see how it looks by the end of the day (we do check it during the day, so far no change from this morning.)
In addition to the good news that we are still home, James has had two very good eating days in a row. Unusual for him, but perhaps attributable to being on steroids. No matter how he gets to eating more of what he needs, at least he is practicing, and that is a very helpful thing. Yesterday, he drank about 8 ounces all by himself, today he isn't drinking so much. He is liking cheese melted on Wasa type crackers, egg yolks (poached to pudding like consistency and well-salted, thank-you-very-much!)
Of course, you can see my lack of faith in the packed and ready to go suitcases sitting in the kitchen. God is so good to us. All the time.
Gratefully,
Stephanie
Monday night, it was clear that James' g-tube site was eroding. Hannah, Vern and I figured it was 'just a matter of time' again. And it still may be... but Vern said on Tuesday morning that he wanted us to get James seen soon. Tuesday preferably, Wednesday at the latest. I tried to get things worked out for yesterday and by the end of the day, his g-tube site didn't look any worse to me than it had in the morning.
This morning, PTL, it actually looked better in most regards. So we will see how it looks by the end of the day (we do check it during the day, so far no change from this morning.)
In addition to the good news that we are still home, James has had two very good eating days in a row. Unusual for him, but perhaps attributable to being on steroids. No matter how he gets to eating more of what he needs, at least he is practicing, and that is a very helpful thing. Yesterday, he drank about 8 ounces all by himself, today he isn't drinking so much. He is liking cheese melted on Wasa type crackers, egg yolks (poached to pudding like consistency and well-salted, thank-you-very-much!)
Of course, you can see my lack of faith in the packed and ready to go suitcases sitting in the kitchen. God is so good to us. All the time.
Gratefully,
Stephanie
Friday, May 23, 2008
James, walking with hair
These were taken earlier this week before chemo... Doesn't he look great with hair? :*)...
Love, Stephanie
Grateful for your prayers
It seems like forever since I have journaled here, though I have thought about it a lot. Not long ago I was telling my mom that I was just at a point where I could do it or I could write about it. And the obvious choice was doing. So we have been doing a good deal and the Lord has been mercifully blessing.
Thursday Hannah and I took James to Atlanta for his spinal tap with IV methotrexate and vincristine. We are so grateful to all who prayed for us... I know you are still praying and we are very grateful for that too! Several folks let us know they were praying much even though they couldn't sign up for a time slot. The time is not so important as the praying and the goal is just to pray extra and especially fervently to show the Lord we are serious about our desire to see James well. A sacrifice of praise and other things, as it were.
Our drive to Atlanta was pretty uneventful (although we were a little late--they factor that into their schedule and it didn't hold anyone up). There was plenty of parking (a miracle from our view ;*)). And James didn't seem to have any trouble being hungry although he had been NPO (nothing by mouth--no food or drink) since 4 in the morning.
He had some oral versed (a sedative) and his spinal tap was uneventful. We had some trouble getting a good vein for the vincristine--such are the perils of being NPO before a procedure--but finally one of the nurses got a good vein and by then, James was done being horizontal following the spinal tap. This was the first time he didn't fall asleep! James'counts had actually improved since last week--ANC nearly 2200; Hgb 11.9 (maybe due to mild dehydration).
He did vomit some at the clinic and more on the way home. Thankfully it wasn't a lot and it was only twice, but it surprised all of us--probably James mostly. It was a little disconcerting, but nothing a little I-C-E-C-R-E-A-M couldn't settle. He did finally get a good nap on the way home and once we arrived home, he was still a little loopy and seemed to lack some muscle control.
This morning, however, he was raring to go and hasn't missed much all day today. To me, he still seems just a little off in the muscle control department. But I think it is a mom-thing and not something readily apparent to folks who don't study his motor control!
Stacy, our nurse practitioner, reminded me to take special note of James' mobility during the next while. This is the first vincristine James has had being so active and walking. Vincristine affects the nerve cells and it can often look like it is affecting muscles. She just said to keep an eye on him for his safety and to let them know how it seems to affect him.
James has had three doses of his new steroids (prednisone) and so far is doing just fine. We are keeping a close eye on his g-tube and hoping we won't be making a trip to Atlanta before our next scheduled office visit on June 12th.
In other little news around here: The Mothers' Day storm knocked out our power and we enjoyed a very quiet day at home. Some of the tornadoes hit near here (within 20 miles) and so we had no church. One of the ladies from church had significant damage to her home and barn, but she, her daughter and all their critters are safe. The insurance adjuster comes tomorrow--pray he would deal justly.
While cleaning up from the storm, Vern picked up a whopper poison ivy rash. It is getting better, but something else is coming up behind it... some sort of dermatitis, so we need to get him looked at.
We have kittens--2 mamas, 8 babies. They're really cute and it looks like some will be great, active mousers. Anyone know someone who'd like one (or more). The first batch of 3 will be 8 weeks old June 2. Their momma has already litter box trained them and they can be indoor, outdoor or both.
Vern's last day of school with students was today. Two more days of post-planning next week, then summer break (except for a three-day class). He also finished his first online college course-- a good experience overall.
Our garden is doing well, although with warmer temps come more bugs and some disease, so we are spraying some. We are curious to see how our potatoes fare. We dug up under one plant to get new potatoes and there wasn't much. Maybe we will have all leaves. Some here have had great success with potatoes and others not. The Lord really blessed our cabbage, peas and lettuce. We have agreed we need to plant LOTS more peas and broccoli in fall. We have picked some summer squash and are watching the corn (which is about ankle high), beans, tomatoes, little watermelons, cukes, peppers and eggplants.
The chickens are over on friends' land--150+ meat birds. They have about four weeks til they cool off in the freezer and they are doing MUCH better than last year. The children and I enjoy going over to chore and seeing how quickly we can move, feed and water them. We've also enjoyed picking some wild blackberries when we can. We are looking into alternative feed options to baat rising feed and gas costs.
The weather promises to be warming up here--we've had some wonderfully late cool weather up til now. With the warming weather, we will, more than likely, be spending more quiet time inside staying cool and trying not to make the house too warm! Time to catch up on some academics and some blogging, Lord willing!
Thank you again for praying with us for James. God is good all the time!
Love, Stephanie
Thursday Hannah and I took James to Atlanta for his spinal tap with IV methotrexate and vincristine. We are so grateful to all who prayed for us... I know you are still praying and we are very grateful for that too! Several folks let us know they were praying much even though they couldn't sign up for a time slot. The time is not so important as the praying and the goal is just to pray extra and especially fervently to show the Lord we are serious about our desire to see James well. A sacrifice of praise and other things, as it were.
Our drive to Atlanta was pretty uneventful (although we were a little late--they factor that into their schedule and it didn't hold anyone up). There was plenty of parking (a miracle from our view ;*)). And James didn't seem to have any trouble being hungry although he had been NPO (nothing by mouth--no food or drink) since 4 in the morning.
He had some oral versed (a sedative) and his spinal tap was uneventful. We had some trouble getting a good vein for the vincristine--such are the perils of being NPO before a procedure--but finally one of the nurses got a good vein and by then, James was done being horizontal following the spinal tap. This was the first time he didn't fall asleep! James'counts had actually improved since last week--ANC nearly 2200; Hgb 11.9 (maybe due to mild dehydration).
He did vomit some at the clinic and more on the way home. Thankfully it wasn't a lot and it was only twice, but it surprised all of us--probably James mostly. It was a little disconcerting, but nothing a little I-C-E-C-R-E-A-M couldn't settle. He did finally get a good nap on the way home and once we arrived home, he was still a little loopy and seemed to lack some muscle control.
This morning, however, he was raring to go and hasn't missed much all day today. To me, he still seems just a little off in the muscle control department. But I think it is a mom-thing and not something readily apparent to folks who don't study his motor control!
Stacy, our nurse practitioner, reminded me to take special note of James' mobility during the next while. This is the first vincristine James has had being so active and walking. Vincristine affects the nerve cells and it can often look like it is affecting muscles. She just said to keep an eye on him for his safety and to let them know how it seems to affect him.
James has had three doses of his new steroids (prednisone) and so far is doing just fine. We are keeping a close eye on his g-tube and hoping we won't be making a trip to Atlanta before our next scheduled office visit on June 12th.
In other little news around here: The Mothers' Day storm knocked out our power and we enjoyed a very quiet day at home. Some of the tornadoes hit near here (within 20 miles) and so we had no church. One of the ladies from church had significant damage to her home and barn, but she, her daughter and all their critters are safe. The insurance adjuster comes tomorrow--pray he would deal justly.
While cleaning up from the storm, Vern picked up a whopper poison ivy rash. It is getting better, but something else is coming up behind it... some sort of dermatitis, so we need to get him looked at.
We have kittens--2 mamas, 8 babies. They're really cute and it looks like some will be great, active mousers. Anyone know someone who'd like one (or more). The first batch of 3 will be 8 weeks old June 2. Their momma has already litter box trained them and they can be indoor, outdoor or both.
Vern's last day of school with students was today. Two more days of post-planning next week, then summer break (except for a three-day class). He also finished his first online college course-- a good experience overall.
Our garden is doing well, although with warmer temps come more bugs and some disease, so we are spraying some. We are curious to see how our potatoes fare. We dug up under one plant to get new potatoes and there wasn't much. Maybe we will have all leaves. Some here have had great success with potatoes and others not. The Lord really blessed our cabbage, peas and lettuce. We have agreed we need to plant LOTS more peas and broccoli in fall. We have picked some summer squash and are watching the corn (which is about ankle high), beans, tomatoes, little watermelons, cukes, peppers and eggplants.
The chickens are over on friends' land--150+ meat birds. They have about four weeks til they cool off in the freezer and they are doing MUCH better than last year. The children and I enjoy going over to chore and seeing how quickly we can move, feed and water them. We've also enjoyed picking some wild blackberries when we can. We are looking into alternative feed options to baat rising feed and gas costs.
The weather promises to be warming up here--we've had some wonderfully late cool weather up til now. With the warming weather, we will, more than likely, be spending more quiet time inside staying cool and trying not to make the house too warm! Time to catch up on some academics and some blogging, Lord willing!
Thank you again for praying with us for James. God is good all the time!
Love, Stephanie
Sunday, May 18, 2008
Five prayer requests
In February, when James last got vincristine and steroids. Momma posted five prayer requests for James. We decided to copy and post them here as they still apply. If you want to read that post, click here.
The focus for the prayer time includes (but is not limited to! :*) ) praying:
1. that the vincristine and steroids would attack their intended target (any remaining, but unseen leukemia cells).
2. that the Lord would protect James from any side effects from the vincristine. Especially any slowdown in the movement of the intestine.
3. that, in spite of the steroids in his system, his body would continue to heal and protect itself from breakdown and erosion.
4. that James' counts would remain stable, there would be not infection and no need for a hospital stay.
5. most importantly, that God's perfect will would be done and He would get the glory for it!
Thank you for praying for James.
Blessings, Hannah
The focus for the prayer time includes (but is not limited to! :*) ) praying:
1. that the vincristine and steroids would attack their intended target (any remaining, but unseen leukemia cells).
2. that the Lord would protect James from any side effects from the vincristine. Especially any slowdown in the movement of the intestine.
3. that, in spite of the steroids in his system, his body would continue to heal and protect itself from breakdown and erosion.
4. that James' counts would remain stable, there would be not infection and no need for a hospital stay.
5. most importantly, that God's perfect will would be done and He would get the glory for it!
Thank you for praying for James.
Blessings, Hannah
Thursday, May 15, 2008
Week 55 and a prayer push
James' course of chemotherapy is 110 weeks. This past Thursday, May 15th, marked week number 55 of treatment. He is now half-way through.
Last Thursday, James' nurse called to say that James is cleared for chemo. She also gave me his counts. WBC (white blood cells) were 3.24. Hemoglobin was 11.1. Platelets 735k. ANC (Absolute Neutraphil Count--his ability to fight infection) is 1.97.
We are very proud of James. James doesn't like it when the nurses at clinic hold his finger to poke it for blood, but he will hold out a finger for them and after the poke, he will intently watch the nurse 'milk' his finger. After the nurse gets the blood, she will put a band-aid on. It's isn't usually long before he takes the bandaid off, or he won't do anything with that hand.
This past couple weeks we have been working on James taking his 6-MP tablets (chemo that he gets every day) by mouth. He has done very well. Momma and I decided to try James on taking his methotrexate by mouth. I woke James up at 4a.m. to take 5 1/2 tablets, he wasn't thrilled till I asked him if he wanted ice cream. After the not-so-smart move on my part, James thought it was time to play. He did go back to sleep around 4:30a.m. and Daddy said later that if James is asleep, 'use the g-tube.' James took the two other doses of methotrexate and one of his two doses of his leucovorin by mouth. He has been doing a little better working on eating too.
After three trys on Saturday, I managed to set up a prayer sign up for James. Its at mysignup.com again, under jamesskelly.
If the link doesn't work, type in www.mysignup.com/jamesskelly. If that doesn't work, please leave a comment on the blog or let us know somehow. If anyone knows how to put up a picture on the sign up, please let me know. I've been trying to get a picture up of James, but the picture won't show up.
James' g-tube is a little red and tender. Please pray that the g-tube site would heal up and not erode with the vincristine and steroids this time and that the chemo would do it's job without any side damage. Other things to pray for: that he would continue to eat more and more food to meet his calorie and nutrition needs and that he would like good food.
Thank you for praying for our family and James! It means so much to us!
Blessings, Hannah
(with a little editing from Momma.)
Last Thursday, James' nurse called to say that James is cleared for chemo. She also gave me his counts. WBC (white blood cells) were 3.24. Hemoglobin was 11.1. Platelets 735k. ANC (Absolute Neutraphil Count--his ability to fight infection) is 1.97.
We are very proud of James. James doesn't like it when the nurses at clinic hold his finger to poke it for blood, but he will hold out a finger for them and after the poke, he will intently watch the nurse 'milk' his finger. After the nurse gets the blood, she will put a band-aid on. It's isn't usually long before he takes the bandaid off, or he won't do anything with that hand.
This past couple weeks we have been working on James taking his 6-MP tablets (chemo that he gets every day) by mouth. He has done very well. Momma and I decided to try James on taking his methotrexate by mouth. I woke James up at 4a.m. to take 5 1/2 tablets, he wasn't thrilled till I asked him if he wanted ice cream. After the not-so-smart move on my part, James thought it was time to play. He did go back to sleep around 4:30a.m. and Daddy said later that if James is asleep, 'use the g-tube.' James took the two other doses of methotrexate and one of his two doses of his leucovorin by mouth. He has been doing a little better working on eating too.
After three trys on Saturday, I managed to set up a prayer sign up for James. Its at mysignup.com again, under jamesskelly.
If the link doesn't work, type in www.mysignup.com/jamesskelly. If that doesn't work, please leave a comment on the blog or let us know somehow. If anyone knows how to put up a picture on the sign up, please let me know. I've been trying to get a picture up of James, but the picture won't show up.
James' g-tube is a little red and tender. Please pray that the g-tube site would heal up and not erode with the vincristine and steroids this time and that the chemo would do it's job without any side damage. Other things to pray for: that he would continue to eat more and more food to meet his calorie and nutrition needs and that he would like good food.
Thank you for praying for our family and James! It means so much to us!
Blessings, Hannah
(with a little editing from Momma.)
Friday, May 2, 2008
Counts
Yesterday was counts and chemo day. Momma, James and I left here around 8 a.m. to shop in Milledgeville and in Atlanta as well. We got to the clinic early and so we visited the third floor of the hospital to say 'Hi' to some of our favorite nurses who were working. They were pretty excited to see a taller James with a head full of hair toddling on the floor!
James' counts were good. WBC (white blood cells) 3.56. Hemoglobin was 12 and his platelets were 706k. James' ANC (Absolute Neutraphil Count--his ability to fight infection) was 2.28.
Momma talked to Dr.Keller about a protocol for the next time James gets vincristine and steroids. This time, we're going to try prednisone (James has gotten dexamethasone in the past.) to see what happens. Hopefully, the side effects from the prednisone won't be as bad as the dexamethasone. James will get vincristine and steroids on May 22nd. If I can get it to work, we will attempt to set up a sign-up to pray for James.
Dr. Mohammed, from GI, came over to see James and said his g-tube site looks "Excellent". He said to let them know if we have any trouble with this round of steroids.
We finished our shopping (at SAM's) and headed home, arriving around 10p.m--a long day, but a good one.
May 15th, we go to Macon for counts and James will get chemo at home.
Thank you all for praying, it does make a difference.
Blessings, Hannah
James' counts were good. WBC (white blood cells) 3.56. Hemoglobin was 12 and his platelets were 706k. James' ANC (Absolute Neutraphil Count--his ability to fight infection) was 2.28.
Momma talked to Dr.Keller about a protocol for the next time James gets vincristine and steroids. This time, we're going to try prednisone (James has gotten dexamethasone in the past.) to see what happens. Hopefully, the side effects from the prednisone won't be as bad as the dexamethasone. James will get vincristine and steroids on May 22nd. If I can get it to work, we will attempt to set up a sign-up to pray for James.
Dr. Mohammed, from GI, came over to see James and said his g-tube site looks "Excellent". He said to let them know if we have any trouble with this round of steroids.
We finished our shopping (at SAM's) and headed home, arriving around 10p.m--a long day, but a good one.
May 15th, we go to Macon for counts and James will get chemo at home.
Thank you all for praying, it does make a difference.
Blessings, Hannah
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