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
Sunday, August 23, 2009
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
Wednesday, August 19, 2009
Day +4
Good Morning Prayer Warriors, Thanks for your continued prayers. We feel them for sure. Erin is still in a lot of pain and they did an x-ray just now to see if anything else could be going on. She was able to eat a few bites of food last night and it stayed down so that is a huge praise. Unfortunately she stays on a lot of pain medicine for her stomach pain, so she spends most of her time sleeping off the medicine and doesn't have much time to eat and walk. She is currently getting blood. They gave her O neg, not because she has converted yet, but because they may not have had any A+. Don't really understand. But thanks to all you blood donors again. We are very thankful. Please pray for no pain, no nausea and perfect grafting. We need her donor cells to kick the Leukemia to the curb! God is in control and He will move this mountain! I just have this peace about it. One day at a time Sweet Jesus, that's all we're asking from you!! blessings, janet
"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."
"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."
Tuesday, August 18, 2009
Day +3
Dear Prayer Warriors, Thank you for the prayer support. We need it and are so comforted by the love and encouragement. Since Erin's transplant, they start numbering the days +1 to +100. The first 100 days are the most critical for infections etc. So we are on day +3 today. Also they are watching for engraftment on day 10-14. So many numbers to watch. Her counts are still very low but she doesn't need blood yet. Probably tomorrow. Unfortunately, Erin still has a lot of stomach pain and nausea, although I think the nausea is a little better or at least better controlled. She is on as many drugs as they can find that she isn't allergic too. She isn't having any fun, that's for sure. She hasn't eaten anything in 2 days. I know that isn't the record around here but it takes it's toll as well. She is tired of feeling so crummy. Please pray for relief from the stomach pain. We had a nice visit from a former patient yesterday. He rode his bicycle in to visit with folks going through transplant. He had a transplant 10 years ago and is doing great. It was very encouraging to see a success story. So we are praising God for sending a messenger of hope when we need it the most. He is faithful to provide everything in His time. Gotta love it! Hope your day is lovely. blessings, janet
"To the faithful you show yourself faithful, to the blameless you show yourself blameless, to the pure you show yourself pure, but to the crooked you show yourself shrewd. You save the humble, but your eyes are on the haughty to bring them low. You are my lamp, O Lord; the Lord turns my darkness into light. With your help I can advance against a troop; with my God I can scale a wall. As for God, his way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in him." 2 Samuel 22:26-31
"To the faithful you show yourself faithful, to the blameless you show yourself blameless, to the pure you show yourself pure, but to the crooked you show yourself shrewd. You save the humble, but your eyes are on the haughty to bring them low. You are my lamp, O Lord; the Lord turns my darkness into light. With your help I can advance against a troop; with my God I can scale a wall. As for God, his way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in him." 2 Samuel 22:26-31
Monday, August 17, 2009
Monday, Monday
Hello dear friends....Bill here,
After a very rough Saturday night and Sunday morning, Erin slept most of the rest of Sunday. The medical team is trying to find the right med or combination of meds to alleviate the nausea and the stomach pain. I think the stomach pain is mostly due to the Cyclophosphamide (last chemo drug). She was able to eat a few bites of lunch and some dinner and she begrudgingly got four laps in but really did not feel well doing it. Yesterday was also the first day she got Methotrexate which is a drug to help keep her cells from attacking the new cells she received Saturday. They told us that a side affect of the Methotrexate can be mouth sores, also known as mucositis (for you southerners...that's where the lining of your mouth and intestinal tract peal off and cause alot of pain) and that it will be very important to use the mouth rinse that they provided as often as possible. She had experienced some of that last year and it was no fun so we are praying that she can avoid that side affect this go round. For those of you interested in her counts, it looks like her white cells have bottomed out (<.3), her platelets are down to 69 (they transfuse at <10) and her HCT is at 27.9(they transfuse at <27).
As we await the establishment of the new bone marrow cells, our prayers are for minimal side affects from the meds but at the same time we are told that, in general, a little bit of graft versus host disease (GVHD) is a good thing. What we really want is graft versus Leukemia (the new cells attack the Leukemia cells) and the doctor has told us that the best transplant results occur when there is a little GVHD. I think it is an indicator that the new cells are going to behave differently than her existing cells.
Today's scripture verses are about waiting:
"But if we hope for what we do not yet have, we wait for it patiently." - Romans 8:25
"But as for me, I watch in hope for the Lord, I wait for God my Savior; my God will hear me." - Micah 7:7
"Yet the LORD longs to be gracious to you; he rises to show you compassion. For the LORD is a God of justice. Blessed are all who wait for him!" - Isaiah 30:18
We pray God's richest blessings on each of you this day. - Bill
After a very rough Saturday night and Sunday morning, Erin slept most of the rest of Sunday. The medical team is trying to find the right med or combination of meds to alleviate the nausea and the stomach pain. I think the stomach pain is mostly due to the Cyclophosphamide (last chemo drug). She was able to eat a few bites of lunch and some dinner and she begrudgingly got four laps in but really did not feel well doing it. Yesterday was also the first day she got Methotrexate which is a drug to help keep her cells from attacking the new cells she received Saturday. They told us that a side affect of the Methotrexate can be mouth sores, also known as mucositis (for you southerners...that's where the lining of your mouth and intestinal tract peal off and cause alot of pain) and that it will be very important to use the mouth rinse that they provided as often as possible. She had experienced some of that last year and it was no fun so we are praying that she can avoid that side affect this go round. For those of you interested in her counts, it looks like her white cells have bottomed out (<.3), her platelets are down to 69 (they transfuse at <10) and her HCT is at 27.9(they transfuse at <27).
As we await the establishment of the new bone marrow cells, our prayers are for minimal side affects from the meds but at the same time we are told that, in general, a little bit of graft versus host disease (GVHD) is a good thing. What we really want is graft versus Leukemia (the new cells attack the Leukemia cells) and the doctor has told us that the best transplant results occur when there is a little GVHD. I think it is an indicator that the new cells are going to behave differently than her existing cells.
Today's scripture verses are about waiting:
"But if we hope for what we do not yet have, we wait for it patiently." - Romans 8:25
"But as for me, I watch in hope for the Lord, I wait for God my Savior; my God will hear me." - Micah 7:7
"Yet the LORD longs to be gracious to you; he rises to show you compassion. For the LORD is a God of justice. Blessed are all who wait for him!" - Isaiah 30:18
We pray God's richest blessings on each of you this day. - Bill