Good Morning Prayer Warriors, WooHoo for Day 11!! Erin's WBC is 1.4 today which is more than double yesterday. Grafting is happening!! Thank you Lord!! Erin still has not swallowed anything but I am very hopeful for today. She walked 5 laps yesterday. It took all her willpower! She had a blue kind of day. I can't decide which med is causing that but I can't take it!! She has been so positive until now. But then again, if I missed 6 days of eating and drinking, I would be bummed too!! So please pray for her spirits to soar like her numbers are. They are cutting down her pain med some today so maybe she will be more alert and able to participate in her care. She really has slept 95% of the last 4 days. I think that is an answer to her prayer though. She told me she just wanted to wake up when it is all over. And I don't blame her. But today is a new day and we have healing to do, laps to walk, water to drink and grafting to happen. Praising God that His mercies are new every morning!! Thanks for the prayers. Please keep them up. blessings, janet
"O God, you are my God, earnestly I seek you; my soul thirsts for you, my body longs for you, in a dry and weary land where there is no water. I have seen you in the sanctuary and beheld your power and your glory. Because your love is better than life, my lips will glorify you. I will praise you as long as I live, and in your name I will lift up my hands. My soul will be satisfied as with the richest of foods; with singing lips my mouth will praise you." Psalm 63:1-5
Wednesday, August 26, 2009
Tuesday, August 25, 2009
Day +10
Good Morning Prayer Warriors, Hurray for day +10. As you may recall, the Dr said she would start feeling better on days 10-14. Erin is still asleep but I am so hopeful that she will feel a little better today. We had a BIG day yesterday. She actually walked a lap. I know it doesn't sound like much compared to 21 (a mile), but it is huge for her, as bad as she has been feeling. We really celebrated it. She did not throw up last night so that is another praise. Her WBC is 0.6 today which is another huge praise. That means her new cells are starting to provide the needed recovery. Her mouth and GI track should start to heal and then maybe she can swallow. Are you as excited as we are?? WooHoo, thank you Lord!! She is still very heavily medicated and delirious at times, but maybe she can wean off of some of that today. She sat up around 5 this morning and said she needed to go check on Charlie. He is one of the kids she babysits. So "Hi" out there to Charlie, Erin is thinking of you.
Thank you all for your prayers. You have really helped us keep our focus through all this. There has been a peace in my heart for the last week that can only be the Holy Spirit. I know that He is here in this room calming us and guarding our hearts against fear and despair. Only a loving God would do that. And I know your prayers helped sustain us in that peace. We love you for that. Please keep praying for Erin to heal like crazy! blessings, janet
"Rejoice in the Lord always. I will say it again; Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the PEACE of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phil 4:4-7
Thank you all for your prayers. You have really helped us keep our focus through all this. There has been a peace in my heart for the last week that can only be the Holy Spirit. I know that He is here in this room calming us and guarding our hearts against fear and despair. Only a loving God would do that. And I know your prayers helped sustain us in that peace. We love you for that. Please keep praying for Erin to heal like crazy! blessings, janet
"Rejoice in the Lord always. I will say it again; Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the PEACE of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phil 4:4-7
Monday, August 24, 2009
Day +9
Hi Friends....it's Bill again,
Erin continued to be in a fog of pain meds and slept most of the day Sunday. She had a bout of nausea in the morning and another late last night. They continue to adjust her meds to find a balance between controlling the pain and not making her incoherent. She finally came out of the fog a little last night. She has received 3 platelet transfusions in the past two days. She still has not eaten since Thursday and has not really had anything to drink save for rinsing her mouth out. While the pain is somewhat under control, she is so tired, thirsty, hungry and frustrated. The doctors tell us this is the worst of it and she should start feeling better over the next couple days. Her WBC showed a modest sign of improvement this morning at .3 (it had been showing <.3) and hopefully that is a sign that her new cells are starting to work. She needs her white cells to deal with the mouth sores and raw throat. It is an understatement to say that we are all ready to emerge from this darkness into the light of a new day! I've had the song "Trading My Sorrows" stuck in my head the last few days and decided to post the scriptural basis of the song for today:
"For God, who said, "Let light shine out of darkness," made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ. But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. " - 2 Corinthians 4: 6-9
Blessings on you as you sing it with us!
-Bill
P.S. Our sincere thanks to the generous but nameless soul or souls who so graciously cut our grass and also dropped off new lawncare equipment. We would love to know who you are so we can thank you in person!!
Erin continued to be in a fog of pain meds and slept most of the day Sunday. She had a bout of nausea in the morning and another late last night. They continue to adjust her meds to find a balance between controlling the pain and not making her incoherent. She finally came out of the fog a little last night. She has received 3 platelet transfusions in the past two days. She still has not eaten since Thursday and has not really had anything to drink save for rinsing her mouth out. While the pain is somewhat under control, she is so tired, thirsty, hungry and frustrated. The doctors tell us this is the worst of it and she should start feeling better over the next couple days. Her WBC showed a modest sign of improvement this morning at .3 (it had been showing <.3) and hopefully that is a sign that her new cells are starting to work. She needs her white cells to deal with the mouth sores and raw throat. It is an understatement to say that we are all ready to emerge from this darkness into the light of a new day! I've had the song "Trading My Sorrows" stuck in my head the last few days and decided to post the scriptural basis of the song for today:
"For God, who said, "Let light shine out of darkness," made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ. But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. " - 2 Corinthians 4: 6-9
Blessings on you as you sing it with us!
-Bill
P.S. Our sincere thanks to the generous but nameless soul or souls who so graciously cut our grass and also dropped off new lawncare equipment. We would love to know who you are so we can thank you in person!!
Sunday, August 23, 2009
Day +8
Happy Sabbath Dear Ones, thanks for the prayers. We are plugging along here day by day by the grace of God. I don't know how these patients do this! Hopefully Erin won't remember this week when it's all over. It has been so hard on her. She had another fitful night, lots of vomiting and pain. The only med they found to control her vomiting is a pill and she can't swallow, so she just throws up every time she gets up to the bathroom. Isn't that pleasant to hear about first thing in the morning? Sorry, it is just our reality right now. I forgot to tell you she spiked a temp on friday so they did a chest X-ray and added 2 more antibiotics to her list. The x-ray came back fine. Sometimes the chemo meds reek havoc with your thermostat. Most times they never pinpoint a cause of the fever. Anyway, we are just praying these days pass quickly so she can breathe normally and eat and drink.
On the bright side, Erin is still funny and charming in her Dilaudid fog. She was pretty delirious all day yesterday and last night. They are turning down her PCA a bit today so she can come back to normal a little. It is a difficult balance. Please pray for pain relief, no nausea and of course complete healing. Our perspectives are forever changed by this journey and for that we are grateful. We hope this glimpse into our lives has blessed you with a new perspective as well. God is faithful to walk with us in good times and in bad. We will never take that for granted again. Thanks be to God! love, janet
"He has showed you, O man, what is good. And what does the Lord require of you? To act justly and to love mercy and to walk humbly with your God." Micah 6:8
On the bright side, Erin is still funny and charming in her Dilaudid fog. She was pretty delirious all day yesterday and last night. They are turning down her PCA a bit today so she can come back to normal a little. It is a difficult balance. Please pray for pain relief, no nausea and of course complete healing. Our perspectives are forever changed by this journey and for that we are grateful. We hope this glimpse into our lives has blessed you with a new perspective as well. God is faithful to walk with us in good times and in bad. We will never take that for granted again. Thanks be to God! love, janet
"He has showed you, O man, what is good. And what does the Lord require of you? To act justly and to love mercy and to walk humbly with your God." Micah 6:8
Saturday, August 22, 2009
Day +7
Dear Prayer Warriors, thanks for the ideas for the list. You all are inspired. Erin will have many wonderful things to look forward to when she is able to play. We are praising God right along with you that Erin has maintained her sense of humor. She played hangman last night by using sign language. Actually at one point, Amanda had her writing the letters with her foot. Erin still can't talk or swallow or breathe with her mouth shut, but she still loves a good game of hangman. She watched alot of Wheel of Fortune during her recovery last year and she is pretty good. She might even beat Cioffi.
She spent a fairly miserable night trying to sleep sitting up so she could breathe. Ever had one of those nights when you had a head cold and couldn't breathe? That explains this week for Erin. She also had an episode last night that almost made Amanda pass out. They ended up giving Erin platelets in the middle of the night because of it. She will also need blood today. Please pray for the generous spirit of all the blood donors out there. All these patients completely rely on their donations. Last year Erin had 40 transfusions. This year she will get lots more. Our family made it their goal to give back as many pints as Erin received. That seemed like such a reachable goal, but now I don't know if we can ever give that much!
Today we are thanking God for you, for laughter, for selfless blood donors, and for our hope for the future through Jesus. We are blessed! May you be blessed as well. janet
"Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." James 1:12
She spent a fairly miserable night trying to sleep sitting up so she could breathe. Ever had one of those nights when you had a head cold and couldn't breathe? That explains this week for Erin. She also had an episode last night that almost made Amanda pass out. They ended up giving Erin platelets in the middle of the night because of it. She will also need blood today. Please pray for the generous spirit of all the blood donors out there. All these patients completely rely on their donations. Last year Erin had 40 transfusions. This year she will get lots more. Our family made it their goal to give back as many pints as Erin received. That seemed like such a reachable goal, but now I don't know if we can ever give that much!
Today we are thanking God for you, for laughter, for selfless blood donors, and for our hope for the future through Jesus. We are blessed! May you be blessed as well. janet
"Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." James 1:12
Friday, August 21, 2009
Day +6
Hi Guys....it's Bill here,
Erin continues to have severe mouth and throat pain. She was able to eat a baked potato for dinner (said it was "delicious") and complete her 21 laps (a mile). During the night her mouth got very dry and she had difficulty swallowing and felt like she was choking just trying to sip water. So they are trying to adjust the pain med rates to get her comfortable. The doctors tell us we're at the low point and this is usually the worst part of the process. Erin got platelets yesterday. Her counts are still bottomed out: WBC <.3, platelets are 21 this morning (they increased her transfusion threshold to 20) so she'll likely need another transfusion tomorrow, and her HCT was 29.1 (transfuse at 27). She could not get back to sleep this morning so we watched "Home Alone" at 6:00 a.m. followed by "Elf". She had been wanting to watch Christmas movies for the last couple days.
Even though Erin is having a rough go of it and is pretty heavily medicated, she still manages to keep us laughing. I wanted to share with you a few of her quotable quotes while she is E.U.I. (Erin Under the Influence). She has had trouble speaking and has been whispering everything. At one point Amanda was having difficulty understanding what Erin was trying to tell her and finally Erin said "I'm a lot funnier if you can hear me". At another point she started snapping her fingers and told Janet that she was trying to get Coalbie and Moonie (our dogs) off the couch. When Janet told her the dogs were at home, she said "I know that". Later when Janet was plugging her pump in after walking, Erin said "Thanks for putting my bike away". When told she hadn't ridden her bike in years, she said she actually meant to say thanks for plugging in her pump. During another conversation she said " I know this sounds crazy, but am I supposed to visit Eunice for some reason? Because I can't sit next to Grandmommy on the plane if she is going to hold that plant....I'm not allowed near plants!" Now Grandmommy was not present at the time and obviously there was no plant or plane either.
Today's scripture is about Jesus Calming the Storm:
One day Jesus said to his disciples, "Let's go over to the other side of the lake." So they got into a boat and set out. As they sailed, he fell asleep. A squall came down on the lake, so that the boat was being swamped, and they were in great danger. The disciples went and woke him, saying, "Master, Master, we're going to drown!" He got up and rebuked the wind and the raging waters; the storm subsided, and all was calm. "Where is your faith?" he asked his disciples. In fear and amazement they asked one another, "Who is this? He commands even the winds and the water, and they obey him." - Luke 8: 22-25
I will close for now with our heartfelt thanks to all of you again for weathering this storm with us. Your prayers and encouragement are a source of great comfort and we thank God for blessing us with your presence in our lives!
Blessings....Bill
P.S. Janet here- I think it is so funny that Bill is tattling on Erin's delusions when he is the king of nighttime hallucinations!! Ha.
Erin continues to have severe mouth and throat pain. She was able to eat a baked potato for dinner (said it was "delicious") and complete her 21 laps (a mile). During the night her mouth got very dry and she had difficulty swallowing and felt like she was choking just trying to sip water. So they are trying to adjust the pain med rates to get her comfortable. The doctors tell us we're at the low point and this is usually the worst part of the process. Erin got platelets yesterday. Her counts are still bottomed out: WBC <.3, platelets are 21 this morning (they increased her transfusion threshold to 20) so she'll likely need another transfusion tomorrow, and her HCT was 29.1 (transfuse at 27). She could not get back to sleep this morning so we watched "Home Alone" at 6:00 a.m. followed by "Elf". She had been wanting to watch Christmas movies for the last couple days.
Even though Erin is having a rough go of it and is pretty heavily medicated, she still manages to keep us laughing. I wanted to share with you a few of her quotable quotes while she is E.U.I. (Erin Under the Influence). She has had trouble speaking and has been whispering everything. At one point Amanda was having difficulty understanding what Erin was trying to tell her and finally Erin said "I'm a lot funnier if you can hear me". At another point she started snapping her fingers and told Janet that she was trying to get Coalbie and Moonie (our dogs) off the couch. When Janet told her the dogs were at home, she said "I know that". Later when Janet was plugging her pump in after walking, Erin said "Thanks for putting my bike away". When told she hadn't ridden her bike in years, she said she actually meant to say thanks for plugging in her pump. During another conversation she said " I know this sounds crazy, but am I supposed to visit Eunice for some reason? Because I can't sit next to Grandmommy on the plane if she is going to hold that plant....I'm not allowed near plants!" Now Grandmommy was not present at the time and obviously there was no plant or plane either.
Today's scripture is about Jesus Calming the Storm:
One day Jesus said to his disciples, "Let's go over to the other side of the lake." So they got into a boat and set out. As they sailed, he fell asleep. A squall came down on the lake, so that the boat was being swamped, and they were in great danger. The disciples went and woke him, saying, "Master, Master, we're going to drown!" He got up and rebuked the wind and the raging waters; the storm subsided, and all was calm. "Where is your faith?" he asked his disciples. In fear and amazement they asked one another, "Who is this? He commands even the winds and the water, and they obey him." - Luke 8: 22-25
I will close for now with our heartfelt thanks to all of you again for weathering this storm with us. Your prayers and encouragement are a source of great comfort and we thank God for blessing us with your presence in our lives!
Blessings....Bill
P.S. Janet here- I think it is so funny that Bill is tattling on Erin's delusions when he is the king of nighttime hallucinations!! Ha.
Thursday, August 20, 2009
Day +5
Dear Prayer Warriors, Thanks for checking in. Erin is still in a lot of pain. They just set up a PCA for her pain. It gives a continuous dose and then she has a button to push for more medicine. Hope that works for her. Basically her mouth, throat and whole GI system are raw and every swallow is painful. We are back in the smoothie making business, cuz cold goes down easier. Please pray for pain relief. The Dr just came in and said we can expect this phase to last a week before her numbers come up and her mouth heals. We are just thankful that this too shall pass. There is a light at the end of this tunnel! Our list of 90 things to do after transplant is only on # 37, so we need some suggestions. And while you are thinking of fun things for Erin, plan some for yourself! Have a rock, paper, crazy day!! janet
"Devote yourselves to prayer, being watchful and thankful. And pray for us, too, that God may open a door for our message, so that we may proclaim the mystery of Christ, for which I am in chains. Pray that I may proclaim it clearly, as I should. Be wise in the way you act toward outsiders; make the most of every opportunity. Let your converstion be always full of grace, seasoned with salt, so that you may know how to answer everyone." Colossians 4:2-6
"Devote yourselves to prayer, being watchful and thankful. And pray for us, too, that God may open a door for our message, so that we may proclaim the mystery of Christ, for which I am in chains. Pray that I may proclaim it clearly, as I should. Be wise in the way you act toward outsiders; make the most of every opportunity. Let your converstion be always full of grace, seasoned with salt, so that you may know how to answer everyone." Colossians 4:2-6