F
For the people that have been praying for baby Lanie keep going. i know i have not been giveing update like i was but here is what has been going on in the last month or so.
Lanie's counts are finally 400. She was stuck at 100 all weekend. Even the nurses were excited for Lanie and made her a little poster. However, we aren't being discharged until tomorrow (hopefully it will be tomorrow) because the doctors and pharmacy are working out how we can go home on iv antibiotics without having to give them every six hours.
Tomorrow Lanie is getting her new central line placed. While she is sedated the doctor will tap her shunt to see if there is any lingering infection. If there is infection the shunt will need to be replaced or they may just decide to keep Lanie on antibiotics indefinitley. If there is no infection, we will be able to head home as soon as next week. We have decided to go home on oral chemotherapy. It is a liquid drug that Lanie will take once a day for three weeks then one week off. After two months we will come back to Memphis for an MRI and other check ups. Friday's MRI results were very devastating, but through your prayers God has renewed our strength. We are looking forward to life outside these hospital walls. God reminded us that it's not the end and it's not fair for us to already be mourning for Lanie. We are going to enjoy every moment of every day that God gives us. We pray and believe it will be many days.
Why, God, does it feel like you are holding back your healing hand? We know you can heal Lanie. We believe you will. Please just move. Restore her.
Though it linger, wait for it; it will certainly come and will not delay. Habakkuk 2:3
This prayer seems to come mind every waking moment. While we wait on God, we cherish every smile, every look, every everything... We don't know how long Lanie has. The doctors medically don't think she has very long, but my God is bigger than their medicine.
Lanie was discharged from the hospital late Wednesday evening. Luckily we had yesterday off because Lanie has slept so much the last couple of days. This morning she was a bit more perky, but is already napping away this afternoon.
On Monday Lanie will for sure get her central line placed. Her ANC was too low for them to feel comfortable to do any kind of surgery. Monday at 7:30. We will being oral chemo on Wednesday and then we get to head home!
This is what we believe will happen...
Look at the nations and watch--and be utterly amazed. For I am about to do something in your days that you would not believe even if you were told. Habakkuk 1:5
Well the apartment is packed up, the cars are loaded, and the appointments are finished. We are looking forward to getting on the road and heading home, but today we were reminded how blessed we are by all the precious friends in Memphis. The staff at St. Jude has been a huge blessing both in friendship and expertise. So many of them were teary-eyed as we said to goodbye today. New Hope Christian Church was there providing and praying even before we could ask or know what to ask for. East Winn blessed us many Sundays with communion and their prayers. God bless you all!
Lanie's has her new central line. After yesterday's sedation she slept for about 20 hours. We were nervous about leaving today because she was so out of it yesterday and when she was awake she was so irritable. However this morning at 8:00 she woke up as happy and content as could be. So we finished packing and went to appointments and are about to hit the road.
I keep thinking about the song we sang on Sunday about Jesus is the remedy. He is the remedy for our brokenness, our sinfulness, and our sickness. I keep wondering why...why aren't you being the remedy for Lanie. I know he can heal her. I am being selfish and want the healing here on earth. I want to witness her miracle. God still remains faithful even though it is sometimes hard to see him. He is our comforter and strength.
anie has been stable all day. However she has slept most of the day, which is normal after seizures. She isn't moving her right arm or leg. This could be caused by a seizure or a stroke. The dr. Said she should be some better in the next couple days. Hopefully we will get to go home this weekend because we have hospice on board.
Thank you for all the prayers. We are all home and had a good night's rest. Lanie has not woken up since Friday night. There are times she is aware of noise around her but hasn't opened her eyes. Hopefully I will be able to get on caringbridge today to put more details to the story. It has been a nightmare of a week. Thanks again for the prayers. They are the only way we keep going right now. God bless
I have not been able to get on to caringbridge for the last couple of weeks. Just gotta love technology. Anyways we have had a good time at home. Lanie has slept a ton, which at this stage of the cancer is fairly normal. Well last Wednesday Lanie had a fall. She hit her head on the carpeted floor. There was a small red spot on her head but was gone within minutes, however her screaming continued. Then she began to uncontrollably flail her arms and legs (not realizing it at the time, but she was having a seizure). I called the hospice nurse and she said to take her to the ER and she would meet us there. The small town Nevada ER were quick to send us on to St. John's in Springfield. We chose to go there because they have a St. Jude affiliate there and could get to all her St. Jude records. Once at St. John's Lanie had x-rays and a CT scan but there weren't any bleeds that showed up and her shunt was working fine. However during the CT scan her lips turned purple and her heart rate jumped. She was having a seizure. We were admitted that night for observation and to get the seizures under control. I think we finally fell asleep at 4 am. We were exhausted. Thursday was a calmer day, Lanie rested most of the day. When she was alert she cried but we noticed she didn't open her eyes and her right side was not moving. Thursday evening Lanie had another seizure and stopped breathing. After they nurse pumped air for Lanie, she hooked her up to oxygen and Lanie began breathing on her own. The oxygen was also able to come off after a couple of hours, however she still hadn't woken up. On Friday we were brought home by ambulance before we left the hospital we had to decide on signing a DNR (do not resuscitate). That was the thing we have had to do yet. So now we are home Lanie is fairly comfortable. And when she isn't we have meds to keep her comfortable. She still hasn't opened her eyes but she was trying to move her right arm yesterday. It wasn't much but she tried. We continue to pray for a miracle, but we realize that even if we don't see Lanie's miracle we have seen God work many other miracles during this journey.
Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him." Lamentations 3:22-24
The Lord's Compassion
Praise the Lord, Lanie opened her eyes this morning. The doctors had said she probably wouldn't wake up due to the progression of the disease. However, the Lord's compassions are new every morning (which I think I quoted yesterday, but didn't expect this kind of compassion). Every moment counts. Thank you Jesus! And thank you all for the prayers.
Lanie's Sophia (4 years old) told me on Saturday, "Sometimes you sleep before you go to Heaven...I think I am getting sleepy (as she fake yawns)." So precious...May we be as ready and willing to go to Heaven.
Brandon, Tessie and Lanie
By the way...I have an official ultrasound on Wednesday to find out if we are having a boy or a girl. A preliminary ultrasound with a good friend gave us an idea, so we will let you know on Wednesday with the baby is for sure.
Lanie Update via CaringBridge.org
Lanie was awake from 10:30am til right now when she is struggling to keep her eyes open. This is the longest she has been awake since last Wednesday. We brought Lanie into the living room and sat her up for about 15 minutes. Then fed her a couple bites of cheeto puffs and mandarin oranges. So now she is back in bed and trying to rest. We sent a picture to her doctor and he wrote back saying, "What a miracle!" God continues to amaze us and Lanie continues to fight.
Lanie was given about 3 months to live after she left the hospital. they are now giving her a month or even less. PLEASE pray for the family as they make arraignments for her serves.
Thank you all for praying.
Lanie's counts are finally 400. She was stuck at 100 all weekend. Even the nurses were excited for Lanie and made her a little poster. However, we aren't being discharged until tomorrow (hopefully it will be tomorrow) because the doctors and pharmacy are working out how we can go home on iv antibiotics without having to give them every six hours.
Tomorrow Lanie is getting her new central line placed. While she is sedated the doctor will tap her shunt to see if there is any lingering infection. If there is infection the shunt will need to be replaced or they may just decide to keep Lanie on antibiotics indefinitley. If there is no infection, we will be able to head home as soon as next week. We have decided to go home on oral chemotherapy. It is a liquid drug that Lanie will take once a day for three weeks then one week off. After two months we will come back to Memphis for an MRI and other check ups. Friday's MRI results were very devastating, but through your prayers God has renewed our strength. We are looking forward to life outside these hospital walls. God reminded us that it's not the end and it's not fair for us to already be mourning for Lanie. We are going to enjoy every moment of every day that God gives us. We pray and believe it will be many days.
Why, God, does it feel like you are holding back your healing hand? We know you can heal Lanie. We believe you will. Please just move. Restore her.
Though it linger, wait for it; it will certainly come and will not delay. Habakkuk 2:3
This prayer seems to come mind every waking moment. While we wait on God, we cherish every smile, every look, every everything... We don't know how long Lanie has. The doctors medically don't think she has very long, but my God is bigger than their medicine.
Lanie was discharged from the hospital late Wednesday evening. Luckily we had yesterday off because Lanie has slept so much the last couple of days. This morning she was a bit more perky, but is already napping away this afternoon.
On Monday Lanie will for sure get her central line placed. Her ANC was too low for them to feel comfortable to do any kind of surgery. Monday at 7:30. We will being oral chemo on Wednesday and then we get to head home!
This is what we believe will happen...
Look at the nations and watch--and be utterly amazed. For I am about to do something in your days that you would not believe even if you were told. Habakkuk 1:5
Well the apartment is packed up, the cars are loaded, and the appointments are finished. We are looking forward to getting on the road and heading home, but today we were reminded how blessed we are by all the precious friends in Memphis. The staff at St. Jude has been a huge blessing both in friendship and expertise. So many of them were teary-eyed as we said to goodbye today. New Hope Christian Church was there providing and praying even before we could ask or know what to ask for. East Winn blessed us many Sundays with communion and their prayers. God bless you all!
Lanie's has her new central line. After yesterday's sedation she slept for about 20 hours. We were nervous about leaving today because she was so out of it yesterday and when she was awake she was so irritable. However this morning at 8:00 she woke up as happy and content as could be. So we finished packing and went to appointments and are about to hit the road.
I keep thinking about the song we sang on Sunday about Jesus is the remedy. He is the remedy for our brokenness, our sinfulness, and our sickness. I keep wondering why...why aren't you being the remedy for Lanie. I know he can heal her. I am being selfish and want the healing here on earth. I want to witness her miracle. God still remains faithful even though it is sometimes hard to see him. He is our comforter and strength.
anie has been stable all day. However she has slept most of the day, which is normal after seizures. She isn't moving her right arm or leg. This could be caused by a seizure or a stroke. The dr. Said she should be some better in the next couple days. Hopefully we will get to go home this weekend because we have hospice on board.
Thank you for all the prayers. We are all home and had a good night's rest. Lanie has not woken up since Friday night. There are times she is aware of noise around her but hasn't opened her eyes. Hopefully I will be able to get on caringbridge today to put more details to the story. It has been a nightmare of a week. Thanks again for the prayers. They are the only way we keep going right now. God bless
I have not been able to get on to caringbridge for the last couple of weeks. Just gotta love technology. Anyways we have had a good time at home. Lanie has slept a ton, which at this stage of the cancer is fairly normal. Well last Wednesday Lanie had a fall. She hit her head on the carpeted floor. There was a small red spot on her head but was gone within minutes, however her screaming continued. Then she began to uncontrollably flail her arms and legs (not realizing it at the time, but she was having a seizure). I called the hospice nurse and she said to take her to the ER and she would meet us there. The small town Nevada ER were quick to send us on to St. John's in Springfield. We chose to go there because they have a St. Jude affiliate there and could get to all her St. Jude records. Once at St. John's Lanie had x-rays and a CT scan but there weren't any bleeds that showed up and her shunt was working fine. However during the CT scan her lips turned purple and her heart rate jumped. She was having a seizure. We were admitted that night for observation and to get the seizures under control. I think we finally fell asleep at 4 am. We were exhausted. Thursday was a calmer day, Lanie rested most of the day. When she was alert she cried but we noticed she didn't open her eyes and her right side was not moving. Thursday evening Lanie had another seizure and stopped breathing. After they nurse pumped air for Lanie, she hooked her up to oxygen and Lanie began breathing on her own. The oxygen was also able to come off after a couple of hours, however she still hadn't woken up. On Friday we were brought home by ambulance before we left the hospital we had to decide on signing a DNR (do not resuscitate). That was the thing we have had to do yet. So now we are home Lanie is fairly comfortable. And when she isn't we have meds to keep her comfortable. She still hasn't opened her eyes but she was trying to move her right arm yesterday. It wasn't much but she tried. We continue to pray for a miracle, but we realize that even if we don't see Lanie's miracle we have seen God work many other miracles during this journey.
Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him." Lamentations 3:22-24
The Lord's Compassion
Praise the Lord, Lanie opened her eyes this morning. The doctors had said she probably wouldn't wake up due to the progression of the disease. However, the Lord's compassions are new every morning (which I think I quoted yesterday, but didn't expect this kind of compassion). Every moment counts. Thank you Jesus! And thank you all for the prayers.
Lanie's Sophia (4 years old) told me on Saturday, "Sometimes you sleep before you go to Heaven...I think I am getting sleepy (as she fake yawns)." So precious...May we be as ready and willing to go to Heaven.
Brandon, Tessie and Lanie
By the way...I have an official ultrasound on Wednesday to find out if we are having a boy or a girl. A preliminary ultrasound with a good friend gave us an idea, so we will let you know on Wednesday with the baby is for sure.
Lanie Update via CaringBridge.org
Lanie was awake from 10:30am til right now when she is struggling to keep her eyes open. This is the longest she has been awake since last Wednesday. We brought Lanie into the living room and sat her up for about 15 minutes. Then fed her a couple bites of cheeto puffs and mandarin oranges. So now she is back in bed and trying to rest. We sent a picture to her doctor and he wrote back saying, "What a miracle!" God continues to amaze us and Lanie continues to fight.
Lanie was given about 3 months to live after she left the hospital. they are now giving her a month or even less. PLEASE pray for the family as they make arraignments for her serves.
Thank you all for praying.
