Hey all, We need prayers again, Erin has what we thought was a cold. We took her in yesterday and they swabbed her nose. The results just came back RSV. Many of you know that is a respiratory virus most commonly found in young children. Well, Erin's immune system is like a 6 month old and she has it. They just called to tell us to come in and be admitted for 4 days, so they can treat it. She will be in isolation and have a tent over her bed to help treat it. She will also get antiviral meds etc. Unfortunately that means she will be spending her birthday in the hospital. We are so bummed, but as usual, we know God is in control and so we just have to go with the flow. Please pray for Erin! Thanks, janet
Update... Erin is in E708 but cannot have visitors. She is in isolation. They started her first treatment about 6:15 tonight. It is a 6 hour treatment under the tent. Apparently the riboviron is very toxic, so they don't allow anyone in the room while she is receiving the treatment, not even the nurses. Tomorrow they will be able to break the treatment up into 2 three hour treatments. The treatment doesn't hurt or make people nauseous so she should be fine. She just has to watch TV for 6 hours or sleep. No phone or computer or books. They cover everything in the room so the residue doesn't contaminate anyone that comes in later. Thanks for the prayers and please keep them coming. love, janet
"Be still and know that I am God; I will be exalted among the nations, I will be exalted in the earth. The Lord Almighty is with us; the God of Jacob is our fortress." Psalm 46:10-11
Tuesday, February 9, 2010
Wednesday, February 3, 2010
Wednesday update
Blessings Prayer Warriors,
Thanks for the prayers. Erin has been doing well. She is sleeping better now that the steroids are down by half. She is eating more normally and still walks in the mall with Grandmommy. She claims she has less rage, too. :) Good news for the family! Praise God for His faithfulness through this journey! We didn't have a clinic appt this week so we don't have any numbers to report. This is harder for me than you might think. Erin feels good though and that is all I need to know. She doesn't seem to have any GVH symptoms that we can see. Again, another praise. We are just praying her liver enzymes are calming down so she can continue to get off of some of these meds in the coming weeks and months.
Erin is coming up on her 25th birthday and I can't think of a better gift than to be completely healed! We serve a God of love, mercy and healing and I am praying He is wrapping that gift up with a Big Bow right now!
Again we thank you, from the bottom of our hearts, for all your support. love, janet
"Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers, I do not consider myself yet to have taken hold of it. But one thing I do; Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus." Philippians 3:12-14
Thanks for the prayers. Erin has been doing well. She is sleeping better now that the steroids are down by half. She is eating more normally and still walks in the mall with Grandmommy. She claims she has less rage, too. :) Good news for the family! Praise God for His faithfulness through this journey! We didn't have a clinic appt this week so we don't have any numbers to report. This is harder for me than you might think. Erin feels good though and that is all I need to know. She doesn't seem to have any GVH symptoms that we can see. Again, another praise. We are just praying her liver enzymes are calming down so she can continue to get off of some of these meds in the coming weeks and months.
Erin is coming up on her 25th birthday and I can't think of a better gift than to be completely healed! We serve a God of love, mercy and healing and I am praying He is wrapping that gift up with a Big Bow right now!
Again we thank you, from the bottom of our hearts, for all your support. love, janet
"Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers, I do not consider myself yet to have taken hold of it. But one thing I do; Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus." Philippians 3:12-14
Wednesday, January 27, 2010
Today's info
Blessings Prayer Warriors,
Thanks for your prayers! We just got back from the clinic. Erin got a good report. Two of her liver enzymes are down a smidge and one was exactly the same. To be exact, her alkaline phosphatase is 225 ( normal is 32-91) and last week it was 225 also. Alanine aminotransferase is 237 ( normal is < 34) and last week it was 316. And her aspartate aminotransferase is 92 (normal is 15-41) and last week it was 95. Her magnesium is still low so she gets to keep taking 6 of those pills a day. Joy!! Too much info again, but details for those of you in the field. They were happy enough with those numbers to reduce her steroids by half. She is very excited about that because she couldn't go to sleep until 3 a.m. last night. So maybe with a lower dose, she will get more sleep. Her skin looks good, no rashes. She has lots of energy but that may be steroid driven. I guess we will find out as the steroids are reduced. She gets 2 weeks off for good behavior, so we don't go back to the clinic until Feb 10th. They will then schedule her next bone marrow biopsy. Also at the time they plan on starting her immunizations. She will get 6 or 7 shots that need to be repeated a month or so later and a few months after that again. They are anxious to get her immunizations started since she is planning on going back to teach in the fall. Praise God for that!! We are so thankful for a faithful God who has carried us through all this. I just can't describe how lovely it is to see Erin feeling good. We almost feel normal around here. Thank you for rejoicing with us as we take one day at a time. Please pray for her GVH (Graft vs. Host) to GO AWAY AND STAY AWAY!! And please pray for her next biopsy to be clear and easy. Love to you all, janet
"Help me, O Lord my God; save me in accordance with your love. Let them know that it is your hand, that you , O Lord, have done it... With my mouth I will greatly extol the Lord; in the great throng I will praise him. For he stands at the right hand of the needy one, to save his life from those who condemn him." Psalm 109: 26-27,30-31
Thanks for your prayers! We just got back from the clinic. Erin got a good report. Two of her liver enzymes are down a smidge and one was exactly the same. To be exact, her alkaline phosphatase is 225 ( normal is 32-91) and last week it was 225 also. Alanine aminotransferase is 237 ( normal is < 34) and last week it was 316. And her aspartate aminotransferase is 92 (normal is 15-41) and last week it was 95. Her magnesium is still low so she gets to keep taking 6 of those pills a day. Joy!! Too much info again, but details for those of you in the field. They were happy enough with those numbers to reduce her steroids by half. She is very excited about that because she couldn't go to sleep until 3 a.m. last night. So maybe with a lower dose, she will get more sleep. Her skin looks good, no rashes. She has lots of energy but that may be steroid driven. I guess we will find out as the steroids are reduced. She gets 2 weeks off for good behavior, so we don't go back to the clinic until Feb 10th. They will then schedule her next bone marrow biopsy. Also at the time they plan on starting her immunizations. She will get 6 or 7 shots that need to be repeated a month or so later and a few months after that again. They are anxious to get her immunizations started since she is planning on going back to teach in the fall. Praise God for that!! We are so thankful for a faithful God who has carried us through all this. I just can't describe how lovely it is to see Erin feeling good. We almost feel normal around here. Thank you for rejoicing with us as we take one day at a time. Please pray for her GVH (Graft vs. Host) to GO AWAY AND STAY AWAY!! And please pray for her next biopsy to be clear and easy. Love to you all, janet
"Help me, O Lord my God; save me in accordance with your love. Let them know that it is your hand, that you , O Lord, have done it... With my mouth I will greatly extol the Lord; in the great throng I will praise him. For he stands at the right hand of the needy one, to save his life from those who condemn him." Psalm 109: 26-27,30-31
Wednesday, January 20, 2010
Another day
Hello Prayer Warriors,
Thanks for your prayers! We just got back from the clinic. Erin's labs were o.k. Two of her three liver enzymes were down some and one was slightly up, so I guess that is o.k. Her magnesium was way down and they wanted her to stay for IV magnesium but Erin asked if she could just take more pills and they agreed. So now she is up to 6 mag pills/day. We won't find out about her immunosuppressant level until later in the day. Last week they e-mailed us to tell us to reduce the prograf pills, so we look forward to getting today's report.
Erin has been feeling great and getting out a little. She and Grandmommy walk the mall 2 miles every day and they both enjoy it. They go early, most of the time, before the stores open. We find they spend less money that way! She has also been keeping up with the latest movies and has started reading again after a long hiatus. And let's not forget the online shopping!! The Dr asked her last week where her energy level was and she said 75%, and apparently that is what they hoped to hear.
Dr. Langston is big on fun for the patients and held Olympic games for the summer Olympics two years ago. So she has Erin helping her plan "games" for the patients to play up on 8E. Erin has had fun planning events, music, and decorations and even medals for the Winter games coming up in a couple of weeks. We hope to attend and help them decorate and will include pictures if we get some.
So as you can see, all is well and we are feeling very blessed. Please pray for Erin's Graft vs. Host to go away and Erin's pill load to decrease so she can get back to 100%. We are praising God for each good day and look forward to many more! love, janet
"This is what the Lord says; "Stand at the crossroads and look; ask for the ancient paths, ask where the good way is, and walk in it, and you will find rest for your souls." Jeremiah 6:16
Thanks for your prayers! We just got back from the clinic. Erin's labs were o.k. Two of her three liver enzymes were down some and one was slightly up, so I guess that is o.k. Her magnesium was way down and they wanted her to stay for IV magnesium but Erin asked if she could just take more pills and they agreed. So now she is up to 6 mag pills/day. We won't find out about her immunosuppressant level until later in the day. Last week they e-mailed us to tell us to reduce the prograf pills, so we look forward to getting today's report.
Erin has been feeling great and getting out a little. She and Grandmommy walk the mall 2 miles every day and they both enjoy it. They go early, most of the time, before the stores open. We find they spend less money that way! She has also been keeping up with the latest movies and has started reading again after a long hiatus. And let's not forget the online shopping!! The Dr asked her last week where her energy level was and she said 75%, and apparently that is what they hoped to hear.
Dr. Langston is big on fun for the patients and held Olympic games for the summer Olympics two years ago. So she has Erin helping her plan "games" for the patients to play up on 8E. Erin has had fun planning events, music, and decorations and even medals for the Winter games coming up in a couple of weeks. We hope to attend and help them decorate and will include pictures if we get some.
So as you can see, all is well and we are feeling very blessed. Please pray for Erin's Graft vs. Host to go away and Erin's pill load to decrease so she can get back to 100%. We are praising God for each good day and look forward to many more! love, janet
"This is what the Lord says; "Stand at the crossroads and look; ask for the ancient paths, ask where the good way is, and walk in it, and you will find rest for your souls." Jeremiah 6:16
Wednesday, January 13, 2010
Long Day at the clinic
Hello Prayer Warriors,
Thanks for the prayers. We have many things to be thankful for this week. Erin found a lump on her hip on Friday that gave us a scare. As you may recall, Friday was icy in Atlanta. When we called about the lump and described it to them, they said not to come in because of the roads and unless the lump got bigger, it should be fine to wait until today. So we tried to put it out of our minds for the last 6 days, but you know how your subconscious still works on things. Anyway, the Dr checked it out and said she didn't think it was anything to worry about. We just have to watch it for any change. So that is our first praise and prayer concern. Another praise is that Erin's liver enzymes were slightly lower today. They are still not quite normal, but they are trending that way. One thing we still need prayers for is Erin's prograf level. The Dr called last week after our visit and told us her level is still too low to be therapeutic. They started Erin back on Posiconizole (her least favorite med) to help increase the prograf level and it has been hurting her stomach. We are still waiting to hear about today's prograf level. Please pray her GVH goes away quickly so she can get off of the steroids and other meds that are giving her nasty side effects like insomnia, a little rage (and by the way, rage is catchy), and stomach pain. The Dr said today it may be months before she can stop them.
Another blessing was that we got to visit the mother of an old friend who is currently going through AML treatment. Her transplant is this Friday. While we were there, one of the nurses grabbed Erin to encourage an 18 year old girl who just had a transplant today. Erin's bright smile and great attitude were a blessing to at least 2 patients and a bunch of nurses today. Of course, when you think you are blessing others, you end up receiving more blessing yourself. That's how God's love multiplies! It's beyond our comprehension. We are thankful to be on the other side of that experience and be able to help others. And as always, we are thankful for all of you! Blessings! janet
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows." 2 Corinthians 1:3-5
Thanks for the prayers. We have many things to be thankful for this week. Erin found a lump on her hip on Friday that gave us a scare. As you may recall, Friday was icy in Atlanta. When we called about the lump and described it to them, they said not to come in because of the roads and unless the lump got bigger, it should be fine to wait until today. So we tried to put it out of our minds for the last 6 days, but you know how your subconscious still works on things. Anyway, the Dr checked it out and said she didn't think it was anything to worry about. We just have to watch it for any change. So that is our first praise and prayer concern. Another praise is that Erin's liver enzymes were slightly lower today. They are still not quite normal, but they are trending that way. One thing we still need prayers for is Erin's prograf level. The Dr called last week after our visit and told us her level is still too low to be therapeutic. They started Erin back on Posiconizole (her least favorite med) to help increase the prograf level and it has been hurting her stomach. We are still waiting to hear about today's prograf level. Please pray her GVH goes away quickly so she can get off of the steroids and other meds that are giving her nasty side effects like insomnia, a little rage (and by the way, rage is catchy), and stomach pain. The Dr said today it may be months before she can stop them.
Another blessing was that we got to visit the mother of an old friend who is currently going through AML treatment. Her transplant is this Friday. While we were there, one of the nurses grabbed Erin to encourage an 18 year old girl who just had a transplant today. Erin's bright smile and great attitude were a blessing to at least 2 patients and a bunch of nurses today. Of course, when you think you are blessing others, you end up receiving more blessing yourself. That's how God's love multiplies! It's beyond our comprehension. We are thankful to be on the other side of that experience and be able to help others. And as always, we are thankful for all of you! Blessings! janet
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows." 2 Corinthians 1:3-5
Wednesday, January 6, 2010
Happy New Year
Hello Prayer Warriors,
Thanks for the prayers! We just got back from our weekly visit to the clinic. Erin's numbers are holding stable. Her liver enzymes are still a bit high but have not increased, so that is good. Everything else looks good. Her skin isn't itching as much and she has been able to sleep better, thank the Good Lord! She is still on steroids so she feels great. We had a treat at the clinic today. While Erin was in getting her labs drawn, I looked over, and I realized Trisha Yearwood was there supporting a patient. Of course everyone in the clinic has to wear a mask, so I couldn't see her whole face, but it was her. So when Erin came out from her labs, I asked Trisha if we could get a photo of her with Erin. She was very gracious and asked about Erin's cancer etc. It was a delightful surprise. Erin made a New Year's resolution to take a photo every day, so she had her camera with her. Very cool. It made Erin's day, and it will definitely make her photo album!! I am trying to add it on here too.
Over the last couple of weeks, Erin has been saying she wished she could get a wish from the Make a Wish Foundation, but it is only for "kids". She said her wish would be to get a sideline pass for the Georgia Bulldogs and get to wear a headphone and stand there with all the players etc. I told her I thought she was aiming low (no offense to all the UGA fans), and should ask to meet Sandra Bullock or something really big. So of course she threw it back at me and said o.k., make that happen! You know how these conversations go... anyway, I told her today I thought meeting Trisha should fulfill her wish! Wasn't that a sweet gift from God to make Erin's day brighter? He is thoughtful that way.
Again, thanks for the prayers. love, janet
"Praise the Lord, O my soul; all my inmost being, praise his Holy name. Praise the Lord, O my soul, and forget not all his benefits - who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's." Psalm 103: 1-5
Wednesday, December 30, 2009
Happy New Year (and the 2 year anniversary of diagnosis)
Happy New Year Prayer Warriors,
Thanks for the prayers. We really need them. We just got back from the clinic. Erin's liver enzymes are still up but they said it would take a couple of weeks to get everything under control. Her other numbers looked good. Erin feels like she has been beat up with a baseball bat. Her skin is very sensitive and itchy. They are checking muscle enzymes to see if it is her skin or her muscles that is causing that feeling. They labeled it "Acute GVH" even though she is outside the 100 days that we were so concerned about. Please pray it all settles down quickly so she can get off of these steroids. The steroids keep her awake at night. Last night she was up til 3 a.m. That is no fun when your body is exhausted. They have added a sleeping pill to her bucket-o-pills. Hope it works. We are so thankful she still has energy to play and an appetite to eat. God is good. Thanks again for the prayers for her continued recovery. 2010 should be a great year!! Hope you all have a Happy New Year! We love you, janet
"I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh. And I will put my Spirit in you and move you to follow my decrees and be careful to keep my laws. You will live in the land I gave your forefathers; you will be my people and I will be your God." Ezekiel 36:26-68
Let's start the New Year right!! Amen
Thanks for the prayers. We really need them. We just got back from the clinic. Erin's liver enzymes are still up but they said it would take a couple of weeks to get everything under control. Her other numbers looked good. Erin feels like she has been beat up with a baseball bat. Her skin is very sensitive and itchy. They are checking muscle enzymes to see if it is her skin or her muscles that is causing that feeling. They labeled it "Acute GVH" even though she is outside the 100 days that we were so concerned about. Please pray it all settles down quickly so she can get off of these steroids. The steroids keep her awake at night. Last night she was up til 3 a.m. That is no fun when your body is exhausted. They have added a sleeping pill to her bucket-o-pills. Hope it works. We are so thankful she still has energy to play and an appetite to eat. God is good. Thanks again for the prayers for her continued recovery. 2010 should be a great year!! Hope you all have a Happy New Year! We love you, janet
"I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh. And I will put my Spirit in you and move you to follow my decrees and be careful to keep my laws. You will live in the land I gave your forefathers; you will be my people and I will be your God." Ezekiel 36:26-68
Let's start the New Year right!! Amen
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