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
Wednesday, January 20, 2010
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
Wednesday, December 23, 2009
1st weekly update
Merry Christmas Prayer Warriors,
I know it has been a long wait since our last conversation. This weekly update was hard for me to wait on too. We just got back from the clinic and they told Erin she has Graft vs. Host. She is itchy but no rash and her mouth is sensitive and dry. The real tell tale sign was that her liver enzymes are up. Graft vs Host on a small scale is not a bad thing because that means she is also getting graft vs. leukemia which is the whole point of having a transplant. Basically, since her liver sustained a "trauma" during her bout of VOD back in aug/sept, it has been trying to recover slowly. In the meantime, it hasn't been metabolizing her immunosuppressant drug very quickly. so they had her on a very small dose. Now that her liver is starting to recover, it is metabolizing her medicine faster and so the level has dropped enough to stir up the GVH response. All that to say, they are putting her on steroids and doubling her immunosuppressant to get everything stabilized for now. Of course, any news like this is hard to understand and have to deal with 2 days before Christmas. We praise God that He is in control as always!!! Please pray for Erin's liver to recover and do what it is supposed to do. Also please pray that Erin shakes off this news and is ready to Rock and Roll for Christmas! We also ask you to pray for our friend Megan who is also suffering from GVH at this time. Thanks as always for the prayers. We pray that you all have a blessed Christmas! love, janet
"And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger." Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, "Glory to God in the highest, and on earth peace to men on whom his favor rests." Luke 2:8-14
I know it has been a long wait since our last conversation. This weekly update was hard for me to wait on too. We just got back from the clinic and they told Erin she has Graft vs. Host. She is itchy but no rash and her mouth is sensitive and dry. The real tell tale sign was that her liver enzymes are up. Graft vs Host on a small scale is not a bad thing because that means she is also getting graft vs. leukemia which is the whole point of having a transplant. Basically, since her liver sustained a "trauma" during her bout of VOD back in aug/sept, it has been trying to recover slowly. In the meantime, it hasn't been metabolizing her immunosuppressant drug very quickly. so they had her on a very small dose. Now that her liver is starting to recover, it is metabolizing her medicine faster and so the level has dropped enough to stir up the GVH response. All that to say, they are putting her on steroids and doubling her immunosuppressant to get everything stabilized for now. Of course, any news like this is hard to understand and have to deal with 2 days before Christmas. We praise God that He is in control as always!!! Please pray for Erin's liver to recover and do what it is supposed to do. Also please pray that Erin shakes off this news and is ready to Rock and Roll for Christmas! We also ask you to pray for our friend Megan who is also suffering from GVH at this time. Thanks as always for the prayers. We pray that you all have a blessed Christmas! love, janet
"And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger." Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, "Glory to God in the highest, and on earth peace to men on whom his favor rests." Luke 2:8-14
Wednesday, December 16, 2009
Wed 9 days til Christmas
Hello Prayer Warriors,
Thanks for your prayers!! Erin is doing fine and so is Bill. We just got back from Bill's surgery and he did great. Good thing Erin feels better enough to help me with him. Isn't God's timing perfect that way! Amanda suggested I start blogging just once a week since things are so much better. Sounds like a plan. I will try to wean myself off. I am sort of co-dependent on this blog and your prayers. But isn't that the best blessing to be at this point in Erin's recovery!! Woo Hoo. Merry Christmas!! janet
"If you keep your feet from breaking the Sabbath and from doing as you please on my holy day, if you call the Lord's holy day honorable, and if you honor it by not going your own way and not doing as you please or speaking idle words, then you will find your joy in the Lord, and I will cause you to ride on the heights of the land and to feast on the inheritance of your father Jacob." The mouth of the Lord has spoken.
Thanks for your prayers!! Erin is doing fine and so is Bill. We just got back from Bill's surgery and he did great. Good thing Erin feels better enough to help me with him. Isn't God's timing perfect that way! Amanda suggested I start blogging just once a week since things are so much better. Sounds like a plan. I will try to wean myself off. I am sort of co-dependent on this blog and your prayers. But isn't that the best blessing to be at this point in Erin's recovery!! Woo Hoo. Merry Christmas!! janet
"If you keep your feet from breaking the Sabbath and from doing as you please on my holy day, if you call the Lord's holy day honorable, and if you honor it by not going your own way and not doing as you please or speaking idle words, then you will find your joy in the Lord, and I will cause you to ride on the heights of the land and to feast on the inheritance of your father Jacob." The mouth of the Lord has spoken.
Tuesday, December 15, 2009
Tues 10 days til Christmas
Blessings Prayer Warriors,
Thanks for the prayers. Erin is feeling fine today. She ended up using the bucket last night. I don't know if it was the salad she ate or the fact that I was bragging yesterday about her not using the bucket in a while. I think it was just a random thing, nothing big going on. But rest assured, I shall not say another word about the bucket. Erin's friend Jenna brought by some things full of corn and rice that one of her church members made for Erin. You microwave them to warm them up and they stay warm a long time so you can snuggle with them. Just putting it out there for the committee at large, for any objections before we let her use them. We got slammed on the electric blanket, so I want to be sure. I will use the microwave and run, as usual. I won't let her near it. How's that sound? Heaven knows I am trying everything to keep her warm and safe at the same time.
Bill's surgery got changed to 1:45 in case your prayers are time specific. Thanks in advance. blessings on your day, janet
"As a mother comforts her child, so will I comfort you; and you will be comforted over Jerusalem." Isaiah 66:13
Thanks for the prayers. Erin is feeling fine today. She ended up using the bucket last night. I don't know if it was the salad she ate or the fact that I was bragging yesterday about her not using the bucket in a while. I think it was just a random thing, nothing big going on. But rest assured, I shall not say another word about the bucket. Erin's friend Jenna brought by some things full of corn and rice that one of her church members made for Erin. You microwave them to warm them up and they stay warm a long time so you can snuggle with them. Just putting it out there for the committee at large, for any objections before we let her use them. We got slammed on the electric blanket, so I want to be sure. I will use the microwave and run, as usual. I won't let her near it. How's that sound? Heaven knows I am trying everything to keep her warm and safe at the same time.
Bill's surgery got changed to 1:45 in case your prayers are time specific. Thanks in advance. blessings on your day, janet
"As a mother comforts her child, so will I comfort you; and you will be comforted over Jerusalem." Isaiah 66:13